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Specialized Information Resources

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Description: Programs that maintain information about community resources that are appropriate for a specific target group or human services sector (for example, youth programs or addiction services) and which link individuals who are in need of specialized services with appropriate resources and/or which provide information about community agencies and organizations that offer specialized services. (AIRS TJ-3000.8000)

If you know of a Service that should be listed but isn't, please Suggest a New Provider. If you find errors in a listing, please let us know by using the "Suggest an Edit" form on the provider's detail page.
Disclaimer...
Note: Service listings do not represent a recommendation or endorsement by the Medical Home Portal staff or its sponsoring organizations; nor do they reflect any assessment of the quality or value of a listed Service.

AHEAD: Association of Higher Education and Disability
107 Commerce Centre Drive, Suite 204
Huntersville, NC 28078
 Phone: 704-947-7779
Service Categories:
College Disability Centers
Educational Advocacy
Specialized Information Resources
Address: 107 Commerce Centre Drive, Suite 204
Huntersville, NC 28078
Phone: 704-947-7779
Fax: 704-948-7779
Service Categories:
College Disability Centers
Educational Advocacy
Specialized Information Resources
URL: https://www.ahead.org
Services Provided: Committed to full participation of persons with disabilities in post-secondary education. Website resources include civil rights, legal resources, DSS professionals.
Provider Profiles: Affiliate programs Utah AHEAD, New Mexico AHEAD
Original Source: MedHome Portal
Last Updated: 8/20/2018
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ARCH National Respite Network and Resource Center, National Respite Locator Service
800 Eastown Drive, Suite 105
Chapel Hill, NC 27514
 Phone: 706-256-2084
Service Categories:
Camps for Children with Special Needs
Respite Care
Specialized Information Resources
Organization Name: National Respite Locator Service
Address: 800 Eastown Drive, Suite 105
Chapel Hill, NC 27514
Phone: 706-256-2084
Service Categories:
Camps for Children with Special Needs
Respite Care
Specialized Information Resources
URL: https://archrespite.org/respitelocator
Services Provided: The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community, the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels, and the Lifespan Respite Technical Assistance Center.
Provider Profiles: The ARCH National Respite Network includes summer camps for both children and adults with special needs.

A cooperative agreement with the US Administration for Community Living/ Administration on Aging
Original Source: MedHome Portal
Last Updated: 8/6/2019
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Academy for Eating Disorders
11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
 Phone: 703-234-4079
Service Categories:
Disability Awareness Programs
Specialized Information Resources
Address: 11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Fax: 703-435-4390
Service Categories:
Disability Awareness Programs
Specialized Information Resources
Email: info@aedweb.org
URL: http://www.aedweb.org
Eligibility: Open to the public.
Services Provided: Provides research, educational forums, publications, subject matter experts and current information on treatment and prevention of eating disorders.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
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Alliance for Fertility Preservation
Phone: 925-290-8950
Service Categories:
Medical Care Expense Assistance
Specialized Information Resources
Address:
Phone: 925-290-8950
Service Categories:
Medical Care Expense Assistance
Specialized Information Resources
URL: http://www.allianceforfertilitypreservation.org/
Eligibility: Cancer patients in search of fertility preservation
Services Provided: A locator tool allows cancer patients and oncology professionals to search for fertility preservation services in their area, and to submit referrals or request appointments through a secure online system.
Original Source: MedHome Portal
Last Updated: 1/29/2019
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American Cancer Society
250 Williams Street NW
Atlanta, GA 30303
Service Categories:
Specialized Information Resources
Address: 250 Williams Street NW
Atlanta, GA 30303
TDD: 866-228-4327
Toll Free Phone: 800-227-2345
Service Categories:
Specialized Information Resources
URL: https://www.cancer.org
Wheelchair Accessible: Full Wheelchair Access
Services Provided: Dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer, through research, education, advocacy and service.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/14/2019
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American Cleft Palate Craniofacial Association, Cleft Palate Foundation
1504 East Franklin Street
Chapel Hill, NC 27514
 Phone: 919-933-9044
Service Categories:
Craniofacial/Cleft Palate Clinics
Scholarships
Specialized Information Resources
Organization Name: Cleft Palate Foundation
Address: 1504 East Franklin Street
Chapel Hill, NC 27514
Phone: 919-933-9044
Toll Free Phone: 800-242-5338
Fax: 919-933-9604
Service Categories:
Craniofacial/Cleft Palate Clinics
Scholarships
Specialized Information Resources
Email: info@acpa-cpf.org
URL: https://cleftline.org/
Eligibility: Open to all.
Services Provided: Connects individuals and families affected by cleft lip/palate and other craniofacial to team care, providing education, and offerings personal support. Awards college scholarships, research grants, and silent auction. Provides patient/family Connections Conferences and 24 hour Cleftline.
Find an ACPA Approved Team or View International Team Listings.
Cleft Palate Teams (CPT) and Craniofacial Teams (CFT) are composed of healthcare providers working together to address a variety of needs throughout a person’s life. Teams from the US and Canada can apply for recognition as an ACPA Approved Team. This distinction is for teams that demonstrate they meet the Standards for Approval of Cleft Palate and Craniofacial Teams.
Original Source: MHP-Nationwide
Last Updated: 8/6/2019
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American Diabetes Association
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Service Categories:
Disability Awareness Programs
Specialized Information Resources
Address: 2451 Crystal Drive, Suite 900
Arlington, VA 22202
Toll Free Phone: 800-342-2383
Service Categories:
Disability Awareness Programs
Specialized Information Resources
URL: http://www.diabetes.org/
Services Provided: We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. We fund research to prevent, cure and manage diabetes. We deliver services to hundreds of communities. We provide objective and credible information. We give voice to those denied their rights because of diabetes.

Website offers education, legal rights, health insurance, tips for caregivers, etc.
Original Source: MedHome Portal
Last Updated: 7/30/2019
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American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
 Phone: 214-373-6300
Service Categories:
Specialized Information Resources
Address: 7272 Greenville Avenue
Dallas, TX 75231
Phone: 214-373-6300
Toll Free Phone: 888-242-2453
Service Categories:
Specialized Information Resources
URL: https://www.heart.org/en/
Eligibility: Contact for information.
Services Provided: Provides latest research information; Emergency Cardiovascular Care & CPR; Advocacy, Donations, Volunteering, Programs available and Fundraising Events in the area.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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American Kidney Fund
11921 Rockville Pike Ste 300
Rockville, MD 20852
 Phone: 301-881-3052
Service Categories:
Disability Awareness Programs
Medical Care Expense Assistance
Specialized Information Resources
Address: 11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 301-881-3052
Toll Free Phone: 800-638-8299
Fax: 301-881-3311
Service Categories:
Disability Awareness Programs
Medical Care Expense Assistance
Specialized Information Resources
Email: aandors@kidneyfund.org
URL: http://www.kidneyfund.org
Eligibility: Kidney patients and health care professionals.
Services Provided: Provides health information, education, financial assistance, advocacy and resource referrals for patients and health care professionals. Programs for children include summer enrichment activities and the annual Calendar Kids Art Contest. Financial assistance includes:
Health Insurance Premium Program (HIPP)
Safety Net grants
Disaster relief grants
Grants for children
Prescription drug resources
Medical Expense Assistance
Provider Profiles: Internet Information Resource
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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American Liver Foundation
39 Broadway, Suite 2700
New York, NY 10006
Service Categories:
Specialized Information Resources
Address: 39 Broadway, Suite 2700
New York, NY 10006
Toll Free Phone: 1-800-465-4837
Service Categories:
Specialized Information Resources
URL: https://liverfoundation.org/
Services Provided: The mission of American Foundation ALF is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease. The Desert Southwest Division serves Arizona, New Mexico, Texas and Utah.

Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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Amyotrophic Lateral Sclerosis Association (ALSA) NATIONAL OFFICE
1275 K Street NW Suite 250
Washington, DC 20005
 Phone: 202-407-8580
Service Categories:
Assistive Technology Equipment
National Support Services, Disab/Diag
Specialized Information Resources
Address: 1275 K Street NW Suite 250
Washington, DC 20005
Phone: 202-407-8580
Toll Free Phone: 800-782-4747
Fax: 202-289-6801
Service Categories:
Assistive Technology Equipment
National Support Services, Disab/Diag
Specialized Information Resources
URL: http://www.alsa.org
Services Provided: Leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships,

Assistive Technology Equipment
Disease/Disability Information
Information and Referral
Medical Equipment/Assistive Technology Donation Programs
Support Groups
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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Annualcreditreport.com
PO Box 105283
Atlanta, GA 30348
 Phone: 877-322-8228
Service Categories:
Financial Counseling
Specialized Information Resources
Address: PO Box 105283
Atlanta, GA 30348
Phone: 877-322-8228
Service Categories:
Financial Counseling
Specialized Information Resources
URL: http://www.annualcreditreport.com
Eligibility: Free credit reports available to everyone yearly.
Services Provided: Federal law requires each of the three nationwide consumer credit reporting companies, Equifax, Experian, and TransUnion, provide consumers a free credit report every 12 months if interested. This website allows users to request a credit report from any or all of the companies annually.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Appeal A Decision, Social Security Administration
Baltimore, MD
Service Categories:
SSI, Supplemental Security Income
Specialized Information Resources
Organization Name: Social Security Administration
Address: Baltimore, MD
TDD: 800-325-0778
Service Categories:
SSI, Supplemental Security Income
Specialized Information Resources
URL: https://www.ssa.gov/disabilityssi/appeal.html
Eligibility: SSI denied for medical reasons
Services Provided: For recent applications for Social Security disability benefits or Supplemental Security Income (SSI) that were denied for medical reasons,
request an appeal online and provide documents to support appeal electronically. Individuals may also continue an appeal already started.
Provider Profiles: Internet resource
TDD Phone for Salt Lake City area 800 325 0778
Original Source: MedHome Portal
Last Updated: 6/13/2019
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Arc of the United States: for People with Intellectual and Developmental Disabilities
1825 K Street NW, Suite 1200
Washington, DC 20006
 Phone: 301-565-3842
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://thearc.org/
Eligibility: developmental disabilities
Services Provided: A national organization of and for people with developmental disabilities and their families. Website provides information about public policy; insurance products information; publications; discussion groups; employment registry; and links to local chapters and related organizations.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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Association for Driver Rehabilitation (ADED)
200 First Ave NW Suite 505
Hickory, NC 28601
 Phone: 828-855-1623
Service Categories:
Specialized Information Resources
Address: 200 First Ave NW Suite 505
Hickory, NC 28601
Phone: 828-855-1623
Toll Free Phone: 866-672-9466
Fax: 828-855-1672
Service Categories:
Specialized Information Resources
Email: elizabeth.green@driver-ed.org
URL: https://www.aded.net/default.aspx
Services Provided: The primary professional organization in this specialized area, encouraging equipment development to maximize the transportation options for persons with disabilities. To find a driver rehabilitation specialist in or near your area, please visit our website.

Driving Safety Education
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Attention Deficit Disorder Association
PO Box 103
Denver, PA 17517
 Phone: 800-939-1019
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@add.org
URL: http://www.add.org/
Eligibility: Individuals with ADHD and their families
Services Provided: An international nonprofit organization founded to help adults with Attention Deficit/ Hyperactivity Disorder (ADHD) lead better lives. This volunteer-run organization provides information and resources exclusively for and about adult ADHD.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Autism Speaks
1 East 33rd Street, 2nd Floor
New York, NY 10016
 Phone: 888-772-9050
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 1 East 33rd Street, 2nd Floor
New York, NY 10016
Phone: 888-772-9050
Toll Free Phone: 888-288-4762
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Email: familyservices@autismspeaks.org
URL: https://www.autismspeaks.org/
Eligibility: People with autism, their families and caregivers.
Services Provided: Provides the latest autism science and information; funding research into the causes, prevention, treatments and a cure for autism; awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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Autism Spectrum Connection
PO Box 524
Crown Point, IN 46308
 Phone: 219-789-9874
Service Categories:
Information & Referral Resources
Local Support Groups, Disability/Diag
Specialized Information Resources
Address: PO Box 524
Crown Point, IN 46308
Phone: 219-789-9874
Toll Free Phone: 800-328-8476
Service Categories:
Information & Referral Resources
Local Support Groups, Disability/Diag
Specialized Information Resources
Email: info@aspergersyndrome.org
URL: http://www.aspergersyndrome.org
Eligibility: Open to all.
Services Provided: An online resource for families, individuals, and medical professionals who deal with the challenges of Autism and Autism Spectrum Disorders.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 4/18/2019
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Autism Wandering Awareness Alerts Response and Education (AWAARE), National Autism Association
Service Categories:
Adaptive Sports and Recreation
Disability Awareness Programs
Specialized Information Resources
Organization Name: National Autism Association
Address:
Service Categories:
Adaptive Sports and Recreation
Disability Awareness Programs
Specialized Information Resources
Email: naa@nationalautism.org
URL: http://awaare.nationalautismassociation.org
Eligibility: Open to all.
Services Provided: An online resource of six national nonprofit autism organizations whose mission is to reduce autism-related wandering incidents and deaths. Provides an online Family Wandering Emergency Plan, Big Red Safety Box program, and Toolkits for caregivers, first-responders and teachers.
Includes "Where to find swimming lessons."
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc.
302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
 Phone: 919-715-4092
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
TDD: 919-715-4092
Fax: 919-715-4093
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: http://www.ncbegin.org
Eligibility: Parents of children who are deaf or hard of hearing
Services Provided: Information on communication options, placement, and educational programs for parents of children who are deaf or hard-of-hearing.
Original Source: MedHome Portal
Last Updated: 12/18/2017
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Birth Defect Research for Children Inc.
976 Lake Baldwin Lane, Suite 104
Orlando, FL 32814
 Phone: 407-895-0802
Service Categories:
Specialized Information Resources
Address: 976 Lake Baldwin Lane, Suite 104
Orlando, FL 32814
Phone: 407-895-0802
Service Categories:
Specialized Information Resources
URL: https://www.birthdefects.org/
Services Provided: Provides parents and expectant parents with information about birth defects and support services for their children; a parent-matching program that links families who have children with similar birth defects; sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

Phone: 407 566-8304, 9-5 EST, Mon-Fri or mail by writing to BDRC, 800 Celebration Ave, Suite 225, Celebration FL 34747

Information and Referral
Parent Support Groups
Supported Living Services for Adults with Disabilities
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Blindness Information Hotline, American Council of the Blind
1703 North Beauregard Street Suite 420
Alexandria, VA 22311
 Phone: 202-467-5081
Service Categories:
Information & Referral Resources
Scholarships
Specialized Information Resources
Organization Name: American Council of the Blind
Address: 1703 North Beauregard Street Suite 420
Alexandria, VA 22311
Phone: 202-467-5081
Fax: 703-465-5085
Service Categories:
Information & Referral Resources
Scholarships
Specialized Information Resources
Email: info@acb.org
URL: http://www.acb.org
Eligibility: Those who are blind or visually impaired, their families, friends, doctors, caregivers, and anyone who works with blind or visually impaired people
Wheelchair Accessible: Yes
Services Provided: Non-medical information on blindness, and referrals to various sources of help, state services for the blind, and state libraries for the blind.

Provides college scholarships for blind students.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/6/2019
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Care.com
201 Jones Road, Suite 500
Waltham, MA 02451
Service Categories:
Childcare, Special Needs
Specialized Information Resources
Address: 201 Jones Road, Suite 500
Waltham, MA 02451
Service Categories:
Childcare, Special Needs
Specialized Information Resources
URL: http://www.care.com/
Services Provided: A commercial web-based resource to find private childcare, special needs care, tutors, and other types of care providers. Create an account in order to browse.
Original Source: MedHome Portal
Last Updated: 8/6/2018
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Caregiver Action Network
10400 Connecticut Ave Ste 500
Kensington, MD 20895-3944
 Phone: 800-896-3650
Service Categories:
Specialized Information Resources
Address: 10400 Connecticut Ave Ste 500
Kensington, MD 20895-3944
Phone: 800-896-3650
Service Categories:
Specialized Information Resources
URL: http://www.caregiveraction.org/
Services Provided: A nonprofit providing resources and information to assist caregivers.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Center for Health Care Transition Improvement
1615 M Street NW, Suite 290
Washington, DC 20036
 Phone: 202-223-1500
Service Categories:
Adolescent Health Transition Programs
Medical Quality Improvement Organizations
Specialized Information Resources
Address: 1615 M Street NW, Suite 290
Washington, DC 20036
Phone: 202-223-1500
Service Categories:
Adolescent Health Transition Programs
Medical Quality Improvement Organizations
Specialized Information Resources
Email: info@GotTransition.org
URL: http://gottransition.org
Services Provided: Dedicated to improving health care transition supports for youth moving into the adult health care system, offers education, resources, tools, and state policy advocacy for youth, families, providers, and states. The Six Core Elements of Health Care Transition 2.0 define the basic components of health care transition support.
Provider Profiles: See resources on http://gottransition.org
Original Source: MedHome Portal
Last Updated: 5/22/2018
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Child Care Aware-National-Child Care Resources/Information/Consumer Education, Child Care Aware of America
1515 North Courthouse Road, 2nd Floor
Arlington, VA 22201
 Phone: 703-341-4100
Service Categories:
Child Care Providers
Day Care Assistance
Specialized Information Resources
Organization Name: Child Care Aware of America
Address: 1515 North Courthouse Road, 2nd Floor
Arlington, VA 22201
Phone: 703-341-4100
TDD: 866-278-9428
Fax: 703-341-4101
Service Categories:
Child Care Providers
Day Care Assistance
Specialized Information Resources
URL: http://childcareaware.org/
Eligibility: All children and families.
Services Provided: Operates a toll-free referral line and national website where parents and child care providers can receive information about finding, choosing, and paying for child care, and referrals to local child care resource and referral agencies to receive individualized assistance.
Original Source: MedHome Portal
Last Updated: 6/10/2019
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Child Neurology Foundation
201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Service Categories:
Family Support Centers/Outreach
National Support Services, Disab/Diag
Specialized Information Resources
Address: 201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Service Categories:
Family Support Centers/Outreach
National Support Services, Disab/Diag
Specialized Information Resources
URL: http://www.childneurologyfoundation.org/
Eligibility: For patients or caregivers, advocacy groups, health care providers, and supporters.
Services Provided: CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars
Provider Profiles: National, web-based locator for services
Original Source: MHP-Nationwide
Last Updated: 4/8/2019
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Christopher and Dana Reeve Foundation Paralysis Resource Center
636 Morris Turnpike, Ste 3A
Short Hills, NJ 07078
 Phone: 973-379-2690
Service Categories:
Specialized Information Resources
Address: 636 Morris Turnpike, Ste 3A
Short Hills, NJ 07078
Phone: 973-379-2690
Toll Free Phone: 800-539-7309
Service Categories:
Specialized Information Resources
Email: beisenbud@christopherreeve.org
URL: http://christopherreeve.org
Eligibility: No restrictions
Services Provided: Nonprofit foundation which promotes the health and wellbeing of people living with a spinal cord injury, mobility impairment, and paralysis. The Paralysis Resource Center (PRC) is staffed with information specialists who can provide individualized support via phone/email on any topic related to paralysis, such as what to expect in rehab, the best equipment exchange programs, peer mentoring, educational materials, etc.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 5/30/2019
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Craigslist
Service Categories:
Durable Medical Equipment
Specialized Information Resources
Address:
Service Categories:
Durable Medical Equipment
Specialized Information Resources
URL: http://www.craigslist.org/about/sites/
Services Provided: A commercial on-line resource for resale items including medical equipment, strollers and wheelchairs, and wheelchair-accessible vehicles. Search by city.
Provider Profiles: On-line resource
Original Source: MedHome Portal
Last Updated: 5/23/2018
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Crohn's & Colitis Foundation of America
733 Third Ave Ste 510
New York, NY 10017
 Phone: 800-932-2423
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@ccfa.org
URL: http://www.ccfa.org
Eligibility: Crohn's and Colitis patients, their families and medical professionals.
Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Cystic Fibrosis Foundation Care Centers, Cystic Fibrosis Foundation
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
 Phone: 301-951-4422
Service Categories:
Cystic Fibrosis Clinics
National Support Services, Disab/Diag
Specialized Information Resources
Sweat Testing
Organization Name: Cystic Fibrosis Foundation
Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Fax: 301-951-6378
Service Categories:
Cystic Fibrosis Clinics
National Support Services, Disab/Diag
Specialized Information Resources
Sweat Testing
URL: https://www.cff.org/ccd/
Eligibility: Pediatric and Adult specialized care centers
Services Provided: A web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.
Provider Profiles: The high quality of specialized care located at teaching and community hospitals across the country, these care centers offer the best care, treatments, and support for those with CF.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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Dysautonomia Foundation
315 West 39th Street Suite 701
New York, NY 10018
 Phone: 212-279-1066
Service Categories:
Specialized Information Resources
Address: 315 West 39th Street Suite 701
New York, NY 10018
Phone: 212-279-1066
Service Categories:
Specialized Information Resources
URL: https://familialdysautonomia.org/
Services Provided: Supporting treatment and research for familial dysautonomia. FD is a hereditary disease of the sensory and autonomic nervous systems.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Easter Seals, Inc.
141 West Jackson Boulevard, Suite 1400A
Chicago, IL 60604
 Phone: 800-221-6827
Service Categories:
Specialized Information Resources
Address: 141 West Jackson Boulevard, Suite 1400A
Chicago, IL 60604
Phone: 800-221-6827
Toll Free Phone: 800-221-6827
Fax: 312-726-1494
Service Categories:
Specialized Information Resources
URL: https://www.easterseals.com/
Eligibility: Autism and other disabilities
Services Provided: Provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Epilepsy Foundation of America
8301 Professional Place East Ste 230
Landover, MD 20785-2356
 Phone: 301-459-3700
Service Categories:
Disability Awareness Programs
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 8301 Professional Place East Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Service Categories:
Disability Awareness Programs
Education About Disabilities/Diagnoses
Specialized Information Resources
Email: ContactUs@efa.org
URL: https://www.epilepsy.com/
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided: Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.
Provider Profiles: Spanish Speakers Phone number: 866-748-8008
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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Exceptional Parent Magazine
270 Sparta Ave. Suite 104
Sparta, NJ 07871
 Phone: 973-726-6218
Service Categories:
Parent/Family Education
Specialized Information Resources
Address: 270 Sparta Ave. Suite 104
Sparta, NJ 07871
Phone: 973-726-6218
Toll Free Phone: 800-372-7368 x234
Service Categories:
Parent/Family Education
Specialized Information Resources
URL: http://www.ep-magazine.com
Services Provided: Award winning publication provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals, and educational professionals. The eMagazine is available for free, the monthly print publication is available as a paid subscription.
Content:
Diet & Nutrition
EP Voices: Monthly Columnists
Financial Planning
Schools, Camps & Residences
Provider Profiles: Internet-based and print
Original Source: MedHome Portal
Last Updated: 7/25/2018
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FAIR Health Consumer
NY
 Phone: 855-566-5871
Service Categories:
Health Insurance Counseling and Advocacy
Specialized Information Resources
Address: NY
Phone: 855-566-5871
Service Categories:
Health Insurance Counseling and Advocacy
Specialized Information Resources
URL: https://www.fairhealthconsumer.org/
Services Provided: Get essential information on costs for thousands of procedures and learn insurance basics. A national independent, nonprofit corporation whose mission is to bring transparency to healthcare costs and health insurance information through comprehensive data products and consumer resources. Search for medical and dental costs.
Provider Profiles: Internet-based service
Original Source: MHP-Nationwide
Last Updated: 3/6/2019
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Family Caregiver Alliance, National Center on Caregiving
101 Montgomery Street, Suite 72150
San Francisco, CA 94104
 Phone: 415-434-3388 xl
Service Categories:
Community Advocacy Agencies
National Support Services, General
Respite Care
Specialized Information Resources
Organization Name: National Center on Caregiving
Address: 101 Montgomery Street, Suite 72150
San Francisco, CA 94104
Phone: 415-434-3388 xl
Toll Free Phone: 800-445-8106
Service Categories:
Community Advocacy Agencies
National Support Services, General
Respite Care
Specialized Information Resources
URL: https://www.caregiver.org/
Services Provided: Caregiver services, policy and research. Search for state-based resources using the Family Care Navigator.
Provider Profiles: Internet Information Resource
Original Source: MHP-Nationwide
Last Updated: 3/6/2019
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Find a Therapist, Psychology Today.com
Service Categories:
National Support Services, Disab/Diag
Outpatient Mental Health Care
Specialized Information Resources
Organization Name: Psychology Today.com
Address:
Service Categories:
National Support Services, Disab/Diag
Outpatient Mental Health Care
Specialized Information Resources
URL: https://www.psychologytoday.com/us/therapists
Services Provided: National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.
Provider Profiles: Internet information resource, services locator
Original Source: MedHome Portal
Last Updated: 8/8/2018
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First Candle/Sids Alliance
49-51 Locust Ave Suite 104, Suite 200
New Canaan, CT 06840
 Phone: 203-966-1300
Service Categories:
Specialized Information Resources
Address: 49-51 Locust Ave Suite 104, Suite 200
New Canaan, CT 06840
Phone: 203-966-1300
Toll Free Phone: 800-221-7437
Service Categories:
Specialized Information Resources
URL: https://firstcandle.org/
Wheelchair Accessible: Not Applicable
Services Provided: First Candle is one of the nations leading nonprofit organizations dedicated to safe pregnancies and the survival of babies through the first years of life. Our current priority is to eliminate Stillbirth, Sudden Infant Death Syndrome SIDS and other Sudden Unexpected Infant Deaths SUID with programs of research, education and advocacy.

Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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GoodRx.com
Service Categories:
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Address:
Service Categories:
Prescription Drug Patient Assistance Programs
Specialized Information Resources
URL: http://www.goodrx.com
Services Provided: A website to search for lowest price prescription drugs based on location. Offers coupons, will send refill reminders and alerts when prices change.
Original Source: MedHome Portal
Last Updated: 4/25/2018
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Govbenefits.com
DC
Service Categories:
CHIP, State Children's Health Insur Prog
Medicaid
Medicare Special Needs Plan
SSI, Supplemental Security Income
Specialized Information Resources
Address: DC
Service Categories:
CHIP, State Children's Health Insur Prog
Medicaid
Medicare Special Needs Plan
SSI, Supplemental Security Income
Specialized Information Resources
URL: http://www.benefits.gov/
Services Provided: Govbenefits.com is a free confidential prescreening tool for state and federal government programs. Search for benefits you may be able to receive.
Provider Profiles: Internet resource, State and Federal resources
Partners with USA.gov
Original Source: MedHome Portal
Last Updated: 5/22/2018
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HEATH Resource Center at the National Youth Transitions Center
2134 G Street, NW
Washington, DC 200520001
 Phone: 202-454-1220
Service Categories:
Adolescent Health Transition Programs
Medical Quality Improvement Organizations
Specialized Information Resources
Address: 2134 G Street, NW
Washington, DC 200520001
Phone: 202-454-1220
Service Categories:
Adolescent Health Transition Programs
Medical Quality Improvement Organizations
Specialized Information Resources
Email: askheath@gwu.edu
URL: https://www.heath.gwu.edu/
Services Provided: A national clearinghouse on post-secondary education for individuals with disabilities, managed by The George Washington University Graduate School of Education and Human Development.

HEATH participates in national conferences, training sessions, and workshops, develops training modules, publishes resource papers, fact sheets, directories, and website information, and fosters a network of professionals. askheath@gwu.edu.

Assistive Technology Equipment
Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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Health Insurance Marketplace, Centers for Medicare and Medicaid Services
465 Industrial Boulevard
London, KY 40750-0001
 Phone: 800-318-2596
Service Categories:
Health Insurance Counseling and Advocacy
Specialized Information Resources
Organization Name: Centers for Medicare and Medicaid Services
Address: 465 Industrial Boulevard
London, KY 40750-0001
Phone: 800-318-2596
TDD: 855-889-4325
Toll Free Phone: 800-318-2596
Service Categories:
Health Insurance Counseling and Advocacy
Specialized Information Resources
URL: http://www.healthcare.gov
Eligibility: Anyone looking for health insurance under the Affordable Care Act (ACA).
Services Provided: The Marketplace is an internet-based means of finding health coverage that fits your budget and meets your needs. With one application, you can see all your options and enroll.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Healthy and Ready to Work (HRTW) National Resource Center
ME
Service Categories:
Adolescent Health Transition Programs
Specialized Information Resources
Address: ME
Service Categories:
Adolescent Health Transition Programs
Specialized Information Resources
Email: info@hrtw.org
URL: http://www.nasuad.org/node/51111
Services Provided: Desired outcome is for all youth with special health care needs (YSHCN) to receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence.
Provider Profiles: The HRTW Center is headquartered at the Maine State Title V CSHN Program.
Original Source: MedHome Portal
Last Updated: 12/12/2018
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Huntington's Disease Society of America
505 Eighth Avenue, Suite 902
New York, NY 10018
 Phone: 212-242-1968
Service Categories:
Specialized Information Resources
Address: 505 Eighth Avenue, Suite 902
New York, NY 10018
Phone: 212-242-1968
Toll Free Phone: 800-345-4372
Fax: 212-239-3430
Service Categories:
Specialized Information Resources
Email: dbrown@hdsa.org
URL: https://hdsa.org/
Services Provided: Dedicated to improving the lives of everyone affected by Huntington's disease. From community services and education to advocacy and research.

Information and Referral
Library Services
Peer Counseling
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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IMPACT Project, Family Voices
3701 San Mateo Blvd. NE, Suite 103
Albuquerque, NM 87110
 Phone: 505-872-4774
Service Categories:
Family Support Centers/Outreach
Specialized Information Resources
Organization Name: Family Voices
Address: 3701 San Mateo Blvd. NE, Suite 103
Albuquerque, NM 87110
Phone: 505-872-4774
Toll Free Phone: 888-835-5669
Fax: 505-872-4780
Service Categories:
Family Support Centers/Outreach
Specialized Information Resources
URL: http://www.fv-impact.org/
Services Provided: Promotes a holistic, culturally relevant approach to health and wellness for all families and children including those with special healthcare needs and disabilities, with resources for children and families. IMPACT is a project of national Family Voices.
Original Source: MedHome Portal
Last Updated: 2/1/2018
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Immune Deficiency Foundation
110 West Road Ste 300
Towson, MD 21204
 Phone: 800-296-4433
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Address: 110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Fax: 410-321-9165
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Email: frontdesk@primaryimmune.org
URL: http://www.primaryimmune.org
Eligibility: Individuals with primary immunodeficiency diseases and their families
Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.
Original Source: MHP-Nationwide
Last Updated: 7/11/2019
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International Lactation Consultant Association
110 Horizon Drive Ste 210
Raleigh, NC 27615
 Phone: 919-861-5577
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Address: 110 Horizon Drive Ste 210
Raleigh, NC 27615
Phone: 919-861-5577
Toll Free Phone: 888-452-2478
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Email: info@ilca.org
URL: http://www.ilca.org/why-ibclc/falc
Eligibility: Women seeking breastfeeding assistance
Services Provided: Provides breastfeeding information and a list of local lactation consultants through a web locator.. Sign in required to access.
Original Source: Help Me Grow Utah via United Way 2-1-1
Last Updated: 6/17/2019
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Joe's House
505 East 79th Street Suite 17E
New York, NY 10075
 Phone: 877-563-7468
Service Categories:
Housing, Other
Specialized Information Resources
Address: 505 East 79th Street Suite 17E
New York, NY 10075
Phone: 877-563-7468
Service Categories:
Housing, Other
Specialized Information Resources
Email: info@joeshouse.org
URL: http://www.joeshouse.org/
Eligibility: Cancer patients and their loved ones.
Services Provided: Website lists thousands of places to stay across the country near hospitals and treatment centers that offer a discount for traveling cancer patients and their loved ones.
Provider Profiles: web-based services locator
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/5/2019
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La Leche League International
957 N Plum Grove Road
Schaumburg, IL 60173
 Phone: 919-459-2167
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Address: 957 N Plum Grove Road
Schaumburg, IL 60173
Phone: 919-459-2167
Toll Free Phone: 800-525-3243
Fax: 847-969-0460
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Email: info@llli.org
URL: https://www.llli.org/
Eligibility: Breastfeeding & pregnant women
Services Provided: Helping mothers worldwide to breastfeed through mother-to-mother support, encouragement, information, and education, and to promote a better understanding of breastfeeding as an important element in the healthy development of the baby and mother.
Original Source: MedHome Portal
Last Updated: 7/23/2019
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Lance Armstrong Foundation
2201 E. Sixth Street
Austin, TX 78702
 Phone: 877-236-8820
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 2201 E. Sixth Street
Austin, TX 78702
Phone: 877-236-8820
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: http://www.livestrong.org/
Eligibility: Cancer patients
Services Provided: Empowers the cancer community to address the unmet needs of cancer survivors. To do so, we encourage collaboration, knowledge-sharing and partnership. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
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Laurent Clerc National Deaf Education Center, Gallaudet University
KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
 Phone: 202-651-5051
Service Categories:
Crisis Helplines/Hotlines
Disability Awareness Programs
Specialized Information Resources
Organization Name: Gallaudet University
Address: KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
TDD: 202-651-5052
Fax: 202-651-5054
Service Categories:
Crisis Helplines/Hotlines
Disability Awareness Programs
Specialized Information Resources
URL: http://clerccenter.gallaudet.edu/
Services Provided: Responds to inquiries about a diverse range of topics related to deaf and hard-of-hearing children from infancy to age 21.
Original Source: MedHome Portal
Last Updated: 7/16/2018
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Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234-1349
 Phone: 412-341-1515
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 4156 Library Road
Pittsburgh, PA 15234-1349
Phone: 412-341-1515
Fax: 412-344-0224
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@LDAAmerica.org
URL: https://ldaamerica.org/
Eligibility: People with disabilities, their parents, teachers, and other professionals
Services Provided: LDA provides support to people with learning disabilities, their parents, teachers and other professionals with cutting edge information on learning disabilities, practical solutions, and a comprehensive network of resources.
Original Source: MHP-Nationwide
Last Updated: 8/8/2019
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Listening and Spoken Language Knowledge Center, A.G. Bell
3714 Volta Place NW
Washington, DC 20007
 Phone: 202-337-5220
Service Categories:
Assistive Technology Equipment
Financial Assistance, Other
National Support Services, Disab/Diag
Specialized Information Resources
Organization Name: A.G. Bell
Address: 3714 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Service Categories:
Assistive Technology Equipment
Financial Assistance, Other
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@agbell.org
URL: https://www.agbell.org/Connect#financial-aid
Languages Spoken: Spanish
Services Provided: AAG Bell Financial Aid programs. Also information about language development, early intervention, and hearing technology to help you ensure your child has the opportunity to develop language on par with children who have no hearing loss.
Provider Profiles: A.G. Bell, Association for the Deaf and Heard of Hearing
Original Source: MedHome Portal
Last Updated: 7/26/2018
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Local Recreation Programs and Activities, ActivityReg
Service Categories:
Social & Recreational Opportunities
Specialized Information Resources
Organization Name: ActivityReg
Address:
Service Categories:
Social & Recreational Opportunities
Specialized Information Resources
URL: http://www.activityreg.com/
Services Provided: A website with state listings of recreation programs for youth and adults. Register online for activities, programs at your local recreation center.
Provider Profiles: web-based locator
Intended for the members or participants of recreation facilities using SportsMan SQL to be able to register for classes or activities online, without the facility needing a website. Created by Peak Software Systems, Inc
Original Source: MedHome Portal
Last Updated: 8/1/2018
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Lucile Packard Foundation for Children's Health
400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
 Phone: 650-497-8365
Service Categories:
CSHCN Administration & Programs
Disability Awareness Programs
Specialized Information Resources
Address: 400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Service Categories:
CSHCN Administration & Programs
Disability Awareness Programs
Specialized Information Resources
URL: http://www.lpfch.org/
Services Provided: Dedicated exclusively to the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.
Original Source: MedHome Portal
Last Updated: 2/21/2018
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Lupus Foundation of America
2121 K Street NW, Suite 200
Washington, DC 20037
 Phone: 202-349-1155
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Address: 2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
Fax: 202-349-1156
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@lupus.org
URL: https://www.lupus.org/about-us
Services Provided: Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.
Original Source: MHP-Nationwide
Last Updated: 8/6/2019
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March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
 Phone: 914-428-7100
Service Categories:
Specialized Information Resources
Address: 1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 914-428-7100
Fax: 914-428-8203
Service Categories:
Specialized Information Resources
URL: https://www.marchofdimes.org/
Services Provided: Seeks to improve the health of babies by preventing birth defects and reducing infant mortality. Campaigns for Healthier Babies, which includes programs of research, community service, education and advocacy.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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MedLinePlus, US National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
 Phone: 301-594-5983
Service Categories:
Specialized Information Resources
Organization Name: US National Library of Medicine
Address: 8600 Rockville Pike
Bethesda, MD 20894
Phone: 301-594-5983
Fax: 301-402-1384
Service Categories:
Specialized Information Resources
Email: custserv@nlm.nih.gov
URL: https://medlineplus.gov/
Services Provided: Online medical information resource directs to information to help answer health questions. Information on drugs displays an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/30/2019
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Medicare Extra Help
Service Categories:
Medicare Special Needs Plan
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Address:
Service Categories:
Medicare Special Needs Plan
Prescription Drug Patient Assistance Programs
Specialized Information Resources
URL: https://www.cms.gov/Medicare/Eligibility-and-Enrollment/LowIncSubMedicarePresCov/EligibilityforLowIncomeSubsidy.html
Services Provided: Medicare beneficiaries can qualify for Extra Help with their Medicare prescription drug plan costs. The Extra Help is estimated to be worth about $4,000 per year. Use the website to investigate and apply.
Original Source: MedHome Portal
Last Updated: 8/1/2018
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Mental Health America of Montana
Phone: 406-587-7774
Service Categories:
Specialized Information Resources
Address:
Phone: 406-587-7774
Service Categories:
Specialized Information Resources
URL: http://montanamentalhealth.org/
Original Source: Montana Suggest Provider Queue
Last Updated: 11/16/2018
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MetLife's MetDesk, Metropolitan Life Insurance Company
200 Park Avenue
New York, NY 10166
Service Categories:
Estate & Future Planning
Specialized Information Resources
Organization Name: Metropolitan Life Insurance Company
Address: 200 Park Avenue
New York, NY 10166
Toll Free Phone: 800-638-5433
Service Categories:
Estate & Future Planning
Specialized Information Resources
URL: https://blog.metlife.com/money/special-needs-families/01-11-2016
Services Provided: MetDESK helps families who have children and other dependents with special needs through the maze of legal and financial complexities surrounding planning for the future: how to protect eligibility for important government benefits such as Supplemental Security Income (SSI) and Medicaid; and ways in which special needs trust can provide lifetime care while still preserving government benefit eligibility. Trusts, guardianship, financial planning, selecting appropriate funding vehicles to fund special needs trusts, including life insurance; and choosing a trustee, guardian or conservator.
Original Source: MedHome Portal
Last Updated: 8/1/2018
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Minority Health Resource Center
1101 Wootton Parkway, Suite 600
Rockville, MD 20852
 Phone: 800-444-6472
Service Categories:
Specialized Information Resources
Address: 1101 Wootton Parkway, Suite 600
Rockville, MD 20852
Phone: 800-444-6472
Toll Free Phone: 800-444-6472
Fax: 301-251-2160
Service Categories:
Specialized Information Resources
URL: https://minorityhealth.hhs.gov/
Languages Spoken: Spanish
Eligibility: Contact for specific information. No cost.
Services Provided: The Office of Minority Health Resource Center is the largest resource and referral service on minority health in the nation. Established in 1987, OMH-RC facilitates the exchange of information available at the Federal, State, and local levels on a wide variety of health topics. OMH-RC offers customized database searches, publications, mailing lists, and referrals that address the needs of American Indian and Alaska Native, African American, Asian American and Pacific Islander and Hispanic populations.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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Muscular Dystrophy Association, National
222 S Riverside Plaza, Suite 1500
Chicago, IL 60606
 Phone: 800-572-1717
Service Categories:
Camps for Children with Special Needs
Disability Awareness Programs
National Support Services, Disab/Diag
Neuromuscular Clinics
Specialized Information Resources
Address: 222 S Riverside Plaza, Suite 1500
Chicago, IL 60606
Phone: 800-572-1717
Service Categories:
Camps for Children with Special Needs
Disability Awareness Programs
National Support Services, Disab/Diag
Neuromuscular Clinics
Specialized Information Resources
Email: ResourceCenter@mdausa.org
URL: https://www.mda.org/
Services Provided: Support services, resources, transitional services, information resources for all aspects of living with muscular dystrophy/neuromuscular disease . A web-based locator to find local services and summer camps in many states. Located at more than 150 of the top health care institutions across the United States, [https://www.mda.org/care/mda-care-centers MDA Care Centers and Affiliates] serve as the nexus for expert clinical care and medical research.
Original Source: MHP-Nationwide
Last Updated: 5/22/2019
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Myasthenia Gravis Foundation of America (MGFA)
355 Lexington Avenue, 15th Floor
New York, NY 10017
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 355 Lexington Avenue, 15th Floor
New York, NY 10017
Toll Free Phone: 800-541-5454
Fax: 212-297-2159
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: mgfa@myasthenia.org
URL: https://myasthenia.org/
Services Provided: The only national volunteer health agency dedicated solely to the fight against myasthenia gravis, with over 30 chapters serving patients and their families and caregivers through support groups and programs. .

Charities/Grantmaking Organizations
Disease/Disability Information
Health/Disability Related Support Groups
Information and Referral
Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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Myotonic Dystrophy Foundation
1004 A O'Reilly Avenue
San Francisco, CA 94129
 Phone: 415-800-7777
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Toll Free Phone: 866-968-6642
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@myotonic.org
URL: http://www.myotonic.org
Services Provided: Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.
Original Source: MedHome Portal
Last Updated: 8/23/2018
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NADD: An association for persons with developmental disabilities and mental health needs
132 Fair Street
Kingston, NY 12401
 Phone: 845-331-4336
Service Categories:
Mental Health, Other Services
Specialized Information Resources
Address: 132 Fair Street
Kingston, NY 12401
Phone: 845-331-4336
Service Categories:
Mental Health, Other Services
Specialized Information Resources
Email: jfarr@thenadd.org
URL: http://www.thenadd.org/index.shtml
Eligibility: For persons with developmental disabilities and mental health needs
Services Provided: The mission of NADD is to advance mental wellness for persons with developmental disabilities through the promotion of excellence in mental health care.

Family Support Centers/Outreach
Information and Referral
Library Services
System Advocacy
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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NICHCY Resources, Center for Parent Information and Resources (CPIR)
35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102
 Phone: 973-642-8100
Service Categories:
National Support Services, Disab/Diag
Services for People with Disabilities
Specialized Information Resources
Organization Name: Center for Parent Information and Resources (CPIR)
Address: 35 Halsey Street, 4th floor
c/o SPAN
Newark, NJ 97102
Phone: 973-642-8100
Service Categories:
National Support Services, Disab/Diag
Services for People with Disabilities
Specialized Information Resources
Email: malizo@spanadvocacy.org
URL: https://www.parentcenterhub.org/resourcelibrary/
Eligibility: Disability-related issues for birth to 22
Services Provided: Information and referral center providing information on disabilities and disability-related issues for families, educators, and other professionals.
Provider Profiles: Internet information resources
Original Source: MHP-Nationwide
Last Updated: 4/23/2019
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NIH Neurological Institute
6001 Executive Boulevard Suite 3309
Bethesda, MD 20892
 Phone: 301-496-5751
Service Categories:
Specialized Information Resources
Address: 6001 Executive Boulevard Suite 3309
Bethesda, MD 20892
Phone: 301-496-5751
Service Categories:
Specialized Information Resources
Email: sofrankm@mail.nih.gov
URL: https://www.ninds.nih.gov/
Services Provided: Conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. Collects and disseminates research information related to neurological disorders.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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NMAC - National Minority AIDS Council
1000 Vermont Avenue, NW, Suite 200
Washington, DC 20005
 Phone: 202-815-3129
Service Categories:
Specialized Information Resources
Address: 1000 Vermont Avenue, NW, Suite 200
Washington, DC 20005
Phone: 202-815-3129
Service Categories:
Specialized Information Resources
Email: communications@nmac.org
URL: http://www.nmac.org
Eligibility: Contact for specific information.
Services Provided: Information on HIV/AIDS conferences, news and events, public policy, resources, technical assistance, treatment information and hotlines.

AKA National Minority AIDS Council
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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National Association of Anorexia Nervosa and Associated Disorders (ANAD)
220 North Green Street
Chicago, IL 60607
 Phone: 630-557-1330
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 220 North Green Street
Chicago, IL 60607
Phone: 630-557-1330
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Email: hello@anad.org
URL: https://anad.org/
Eligibility: Eating disorders
Services Provided: Provides online research, educational forums, support groups, professional resources and current information on treatment and prevention of eating disorders. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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National Association of the Deaf
8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
 Phone: 301-587-1788
Service Categories:
Camps for Children with Special Needs
Disability Awareness Programs
Specialized Information Resources
Address: 8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
TDD: 301-587-1789
Fax: 301-587-1791
Service Categories:
Camps for Children with Special Needs
Disability Awareness Programs
Specialized Information Resources
URL: https://www.nad.org/
Eligibility: deaf and hard of hearing
Services Provided: Safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work includes accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. Website features advocacy information and resources.
Provider Profiles: NAD Youth Leadership Camp (YLC) is a four-week intensive educational program for high school students. Camp Taloali, Stayton, Oregon.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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National Ataxia Foundation
2600 Fernbrook Lane Suite 119
Minneapolis, MN 554474752
 Phone: 763-553-0020
Service Categories:
Specialized Information Resources
Address: 2600 Fernbrook Lane Suite 119
Minneapolis, MN 554474752
Phone: 763-553-0020
Fax: 763-553-0167
Service Categories:
Specialized Information Resources
Email: Susan@ataxia.org
URL: http://www.ataxia.org/
Wheelchair Accessible: Access w/o Special Facilities
Services Provided: The National Ataxia Foundation facilitates support groups for those with hereditary and sporadic ataxia. The Foundation also provides information about ataxia, current research activities and
a listing of neurologists in the United States who see patients with ataxia.

Family Support Centers/Outreach
Information and Referral
Support Groups
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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National Brain Tumor Society
55 Chapel Street, Ste 200
Newton, MA 02458
 Phone: 617-924-9997
Service Categories:
Disability Awareness Programs
Specialized Information Resources
Address: 55 Chapel Street, Ste 200
Newton, MA 02458
Phone: 617-924-9997
Fax: 617-924-9998
Service Categories:
Disability Awareness Programs
Specialized Information Resources
URL: http://www.braintumor.org
Eligibility: Anyone interested in brain tumor research, treatment or funding opportunities.
Services Provided: Finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/1/2019
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National Cancer Institute
9609 Medical Center Drive
Bethesda, MD 20892-9760
 Phone: 800-422-6237
Service Categories:
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Fax: (719) 776-3132
Service Categories:
Education About Disabilities/Diagnoses
Specialized Information Resources
Email: cancergovstaff@mail.nih.gov
URL: http://www.cancer.gov
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: A free public service of the National Cancer Institute providing the latest most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/2/2019
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National Caregivers Library
901 Moorefield Park Drive, Suite 100
Richmond, VA 23236
 Phone: 804-327-1111
Service Categories:
National Support Services, General
Specialized Information Resources
Address: 901 Moorefield Park Drive, Suite 100
Richmond, VA 23236
Phone: 804-327-1111
Service Categories:
National Support Services, General
Specialized Information Resources
Email: info@caregiverslibrary.com
URL: http://www.caregiverslibrary.org
Eligibility: Caregivers, seniors and employers
Services Provided: The National Caregivers Library contains online information and resources to assist caregivers and seniors with useful forms, checklists, and topic-specific external resources. The resources are made available at no cost through alliances with professionals, businesses and other agencies serving seniors and their caregivers with a variety of services.
Provider Profiles: Internet resource
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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National Center On Shaken Baby Syndrome
1433 N 1075 West, Suite 110
Farmilngton, UT 84025
 Phone: 801-447-9360
Service Categories:
Child Abuse Prevention
Specialized Information Resources
Address: 1433 N 1075 West, Suite 110
Farmilngton, UT 84025
Phone: 801-447-9360
Fax: 801-447-9364
Service Categories:
Child Abuse Prevention
Specialized Information Resources
Email: mail@dontshake.org
URL: http://www.dontshake.org
Wheelchair Accessible: Complete
Services Provided: A nonprofit 501(c)3 public charity with a mission to “Prevent shaken baby syndrome and promote the well-being of infants generally through the development and implementation of programs, policy and research; and to support and educate families, caregivers and professionals.”
Original Source: MedHome Portal
Last Updated: 11/13/2018
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National Center for Cultural Competence, Georgetown University Center for Child & Human Development
3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Organization Name: Georgetown University Center for Child & Human Development
Address: 3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://nccc.georgetown.edu/index.php
Eligibility: Developmental disabilities (DD)
Services Provided: The goal of the Community of Practice on Cultural and Linguistic Competence in Developmental Disabilities (CoP) is to increase the number, diversity, and capacity of formal and informal leaders to transform their state/territorial developmental disabilities (DD) systems by: (1) advancing and sustaining cultural and linguistic competence (CLC) systemically through changes in values, policy, structures, and practices; and (2) responding effectively to the growing cultural and linguistic diversity among people with DD and their families who reside in states, territories, and tribal nations.

Resources includes papers on developmental disabilities.
Provider Profiles: In April 2017, the NCCC, in collaboration with AIDD, selected the following states and jurisdiction for membership in the CoP: Arizona, California, Colorado, District of Columbia, Indiana, Michigan, New York, Utah, Vermont, Wisconsin
Original Source: MedHome Portal
Last Updated: 8/1/2018
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National Center for Learning Disabilities
32 Laight Street, Second Floor
New York, NY 10013
 Phone: 212-545-7510
Service Categories:
National Support Services, Disab/Diag
Scholarships
Specialized Information Resources
Address: 32 Laight Street, Second Floor
New York, NY 10013
Phone: 212-545-7510
Toll Free Phone: 888-575-7373
Service Categories:
National Support Services, Disab/Diag
Scholarships
Specialized Information Resources
URL: https://www.ncld.org/
Eligibility: Individuals with learning disabilities
Services Provided: Aims to ensure success for all individuals with learning disabilities in school, at work and in life. We:1) connect parents and others with resources, guidance and support so they can advocate effectively for their children; 2) deliver evidence-based tools, resources and professional development to educators to improve student outcomes, and 3) develop policies and engage advocates to strengthen educational rights and opportunities.

Information and Referral
Library Services
Special Education Assessment
Speech and Language Evaluations
System Advocacy
Scholarships for two graduating high school seniors with documented learning disabilities and/or ADHD who are pursuing post-secondary education.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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National Center for Parents with Disabilities, Through the Looking Glass
3075 Adeline Street Ste 120
Berkeley, CA 94703
 Phone: 510-848-1112
Service Categories:
Assistive Technology Equipment
Specialized Information Resources
Organization Name: Through the Looking Glass
Address: 3075 Adeline Street Ste 120
Berkeley, CA 94703
Phone: 510-848-1112
TDD: 800-848-1005
Toll Free Phone: 800-644-2666
Fax: 510-848-4445
Service Categories:
Assistive Technology Equipment
Specialized Information Resources
URL: https://www.lookingglass.org/national-services/national-center
Eligibility: Parents with disabilities who have younger children
Wheelchair Accessible: Full Wheelchair Access
Services Provided: Services include 1. Adaptive Babycare Equipment Consultations--Gives parents with disabilities ideas on how to care for their infants and toddlers more easily with the help of equipment that has been adapted to their disability 2. Information & Referral--Connects parents with resources in their community.

Assistive Technology Training
Disease/Disability Information
Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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National Center on Health, Physical Activity and Disability (NCHPAD)
4000 Ridgeway Drive
Birmingham, AL 35209
Service Categories:
Specialized Information Resources
Address: 4000 Ridgeway Drive
Birmingham, AL 35209
TDD: 800-900-8086
Toll Free Phone: 800-900-8086
Fax: 205-313-7474
Service Categories:
Specialized Information Resources
Email: email@nchpad.org
URL: https://www.nchpad.org/
Services Provided: Indoor or outdoor, recreational or competitive, solo or team, easy or intensive, NCHPAD has the resources, contacts, and assistance you need. Look through our site. Let us know what we can do to help YOU become more active.

Leisure Activities/Recreation
Recreational Activities/Sports
Recreational Facilities
Reference/Information
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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National Child Traumatic Stress Network (NCTSN), Substance Abuse and Mental Health Services Administration (SAMHSA)
5600 Fishers Lane, Parklawn Building, Room 17C-26
Rockville, MD 20857
Service Categories:
Child Abuse Prevention
Child Advocacy
Specialized Information Resources
Organization Name: Substance Abuse and Mental Health Services Administration (SAMHSA)
Address: 5600 Fishers Lane, Parklawn Building, Room 17C-26
Rockville, MD 20857
Service Categories:
Child Abuse Prevention
Child Advocacy
Specialized Information Resources
URL: http://www.nctsn.org/resources/audiences/parents-caregivers
Services Provided: Website-based resources for parents and caregivers who play an essential role in helping children and teenagers recover from traumatic events.
Provider Profiles: Internet-based resource
Original Source: MedHome Portal
Last Updated: 4/18/2019
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National Down Syndrome Congress
300 Mansell Court Suite 108
Roswell, GA 30076
 Phone: 770-604-9500
Service Categories:
Specialized Information Resources
Address: 300 Mansell Court Suite 108
Roswell, GA 30076
Phone: 770-604-9500
Toll Free Phone: 800-232-6372
Fax: 770-604-9898
Service Categories:
Specialized Information Resources
URL: http://www.ndsccenter.org/
Services Provided: The oldest national organization for people with Down syndrome, their families, and the professionals who work with them. We provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.

Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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National Eating Disorders Helpline, National Eating Disorders Association
1500 Broadway Suite 1101
New York, NY 10036
 Phone: 800-931-2237
Service Categories:
Crisis Helplines/Hotlines
Specialized Information Resources
Organization Name: National Eating Disorders Association
Address: 1500 Broadway Suite 1101
New York, NY 10036
Phone: 800-931-2237
Toll Free Phone: 800-931-2237
Fax: 212-575-1650
Service Categories:
Crisis Helplines/Hotlines
Specialized Information Resources
Email: info@NationalEatingDisorders.org
URL: https://www.nationaleatingdisorders.org
Eligibility: Individuals and families affected by eating disorders.
Wheelchair Accessible: Yes
Services Provided: Provides information and treatment options for eating disorders.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/6/2019
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National Hemophilia Foundation
7 Penn Plaza, Suite 1204
New York, NY 10001
 Phone: 212-328-3700
Service Categories:
Specialized Information Resources
Address: 7 Penn Plaza, Suite 1204
New York, NY 10001
Phone: 212-328-3700
Fax: 212-328-3777
Service Categories:
Specialized Information Resources
Email: egoody@hemophilia.org
URL: https://www.hemophilia.org/
Wheelchair Accessible: Not Applicable
Services Provided: Information about preventing the complications of these disorders through education, advocacy and research.

Information and Referral
Peer Counseling
Supported Living Services for Adults with Disabilities
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institute of Health
1 AMS Circle
Bethesda, MD 208923675
 Phone: 301-495-4484
Service Categories:
Specialized Information Resources
Address: National Institute of Health
1 AMS Circle
Bethesda, MD 208923675
Phone: 301-495-4484
TDD: 301-565-2966
Toll Free Phone: 877-226-4267
Fax: 301-718-6366
Service Categories:
Specialized Information Resources
URL: https://www.niams.nih.gov/
Wheelchair Accessible: No Access
Services Provided: Support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases

Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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National Institute of Diabetes and Digestive and Kidney Diseases
3 Information Way
Bethesda, MD 20892-3580
 Phone: 800-860-8747
Service Categories:
Clinical Trials Research
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Service Categories:
Clinical Trials Research
Education About Disabilities/Diagnoses
Specialized Information Resources
Email: healthinfo@niddk.nih.gov
URL: https://www.niddk.nih.gov/
Eligibility: Contact for specific information.
Services Provided: NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/30/2019
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National Institute of Mental Health Resource Center
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
 Phone: 800-421-4211
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 800-421-4211
TDD: 301-443-8431
Toll Free Phone: 866-615-6464
Fax: 301-443-4279
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://www.nimh.nih.gov/index.shtml
Services Provided: Health information: mental health, getting help, statistics, clinical trials; outreach, research, opportunities for funding, labs at NIMH.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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National Kidney Foundation
30 East 33rd Street
New York, NY 10016
 Phone: 800-622-9010
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 800-622-9010
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://www.kidney.org/
Services Provided: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. Information about kidney disease. A peer mentor support program. Self management app for food choices.
Original Source: MHP-Nationwide
Last Updated: 8/13/2019
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National MPS Society
PO Box 14686
Durham, NC 27709-4686
 Phone: 919-806-0101
Service Categories:
Specialized Information Resources
Address: PO Box 14686
Durham, NC 27709-4686
Phone: 919-806-0101
Toll Free Phone: 877-MPS-1001
Service Categories:
Specialized Information Resources
URL: https://mpssociety.org/
Services Provided: The National MPS Society has a three-part mission: to support research through funding, conferences, and collaboration; to support families through education, fundraising assistance for medical expense assistance, resource guides, and advocacy; and to increase public and professional awareness through publicity, and national and international advocacy.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/5/2019
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National Mental Health Information Center, Substance Abuse and Mental Health Services Administration (SAMHSA)
1 Choke Cherry Road
Rockville, MD 20857
 Phone: 800-662-4357
Service Categories:
Disability Awareness Programs
National Support Services, Addiction
Specialized Information Resources
Organization Name: Substance Abuse and Mental Health Services Administration (SAMHSA)
Address: 1 Choke Cherry Road
Rockville, MD 20857
Phone: 800-662-4357
Service Categories:
Disability Awareness Programs
National Support Services, Addiction
Specialized Information Resources
URL: https://findtreatment.samhsa.gov/locator?sType=mh
Eligibility: For users of mental health services and their families, the general public, policy makers, providers, and the media.
Services Provided: The Center for Mental Health Services, within SAMHSA, leads Federal efforts to improve prevention and mental health treatment services for all Americans.
Information Center staff members are skilled at listening and responding to questions from the public and professionals. The staff quickly directs callers to Federal, State, and local organizations dedicated to treating and preventing mental illness. The Information Center also has extensive online and print publications, and information on Federal grants, conferences, and other events.
Provider Profiles: Use the locator website to filter your search: adolescent, substance, payment/insurance accepted, emergency, etc.
Original Source: MedHome Portal
Last Updated: 7/30/2019
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National Organization on Fetal Alcohol Syndrome
1200 Eton Court, NW, Third Floor
Washington, DC 20007
 Phone: 202-785-4585
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 1200 Eton Court, NW, Third Floor
Washington, DC 20007
Phone: 202-785-4585
Toll Free Phone: 800-666-6327
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://www.nofas.org/
Services Provided: The leading voice and resource of the Fetal Alcohol Spectrum Disorders (FASD) community, and committed to the prevention of prenatal exposure to alcohol, drugs, and other substances known to harm fetal development, and to supporting individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/ developmental disabilities.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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National Paralysis Resource Center, Christopher and Dana Reeve Foundation
636 Morris Turnpike Suite 3A
Short Hills, NJ 07078
 Phone: 973-467-8270
Service Categories:
Specialized Information Resources
Organization Name: Christopher and Dana Reeve Foundation
Address: 636 Morris Turnpike Suite 3A
Short Hills, NJ 07078
Phone: 973-467-8270
Toll Free Phone: 800-225-0292
Fax: 973-912-9433
Service Categories:
Specialized Information Resources
Email: infospecialist@christopherreeve.org
URL: https://www.christopherreeve.org/
Services Provided: Provides information on paralysis related questions and referrals.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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National Resource Center on ADHD, CHADD
4601 Presidents Drive Ste 300
Lanham, MD 20706
 Phone: 301-306-7070
Service Categories:
Local Support Groups, Disability/Diag
Specialized Information Resources
Organization Name: CHADD
Address: 4601 Presidents Drive Ste 300
Lanham, MD 20706
Phone: 301-306-7070
Fax: 301-306-7090
Service Categories:
Local Support Groups, Disability/Diag
Specialized Information Resources
Email: Affiliate_Services@chadd.org
URL: http://www.help4adhd.org/
Eligibility: Open to the public, children and adults with attention-deficit/hyperactivity disorder, ADHD.
Services Provided: Provides an online clearinghouse for the latest evidence-based information and resources on ADHD. The National Resource Center on ADHD is a program of CHADD, Children and Adults with Attention-Deficit/Hyperactivity Disorder.
Provider Profiles: Internet based resource
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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Nestle HealthCare Nutrition Patient Assistance Program, Nestle HealthCare Nutrition, Inc.
12 Vreeland Road, 2nd Floor
Florham Park, NJ 07932
 Phone: 800-422-2752
Service Categories:
Food Assistance
Specialized Information Resources
Organization Name: Nestle HealthCare Nutrition, Inc.
Address: 12 Vreeland Road, 2nd Floor
Florham Park, NJ 07932
Phone: 800-422-2752
Toll Free Phone: 800-422-2752
Service Categories:
Food Assistance
Specialized Information Resources
URL: http://www.needymeds.org/company_list.taf?_function=name&program_id=7ffd85d93a3e4de5c490d304ccd9f864
Services Provided: Funding for nutrition products available, including for people who require a tube feeding to meet 100% of daily nutritional requirements. Must telephone for current application. Outdated applications not accepted.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Office of Women's Health, Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201
 Phone: 800-994-9662
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Organization Name: Department of Health and Human Services
Address: 200 Independence Avenue, SW
Washington, DC 20201
Phone: 800-994-9662
Toll Free Phone: 800-994-9662
Fax: 303-844-2019
Service Categories:
Breastfeeding Support Programs
Specialized Information Resources
Email: susana.calderon@hhs.gov
URL: http://www.womenshealth.gov
Eligibility: Anyone seeking health information or referral.
Services Provided: Provides national breastfeeding and women’s health hotlines and works to improve the health and sense of wellbeing of all U.S. women and girls.
Website resources A-Z Health Topics. Supporting nursing mothers at work.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 6/17/2019
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PACER Center: Parents Helping Parents
8161 Normandale Blvd.
Bloomington, MN 55437
 Phone: 952-838-9000
Service Categories:
Assistive Technology Equipment
Disability Awareness Programs
Family Support Centers/Outreach
National Support Services, Disab/Diag
Specialized Information Resources
Address: 8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Toll Free Phone: 800-537-2237
Service Categories:
Assistive Technology Equipment
Disability Awareness Programs
Family Support Centers/Outreach
National Support Services, Disab/Diag
Specialized Information Resources
URL: http://www.pacer.org
Services Provided: Champions for children with disabilities, Parent Advocacy Coalition for Educational Rights, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. A significant Learning Center, Resources, and specifically for Students and Young Adults.
Original Source: MedHome Portal
Last Updated: 8/2/2018
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Pancreatic Cancer Action Network
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
 Phone: 310-725-0025
Service Categories:
Clinical Trials Research
Disability Awareness Programs
Specialized Information Resources
Address: 1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-573-9971
Fax: 310-725-0029
Service Categories:
Clinical Trials Research
Disability Awareness Programs
Specialized Information Resources
Email: info@pancan.org
URL: http://www.pancan.org
Eligibility: Cancer patients, survivors, and their families
Services Provided: Provides research, patient support, community outreach and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. We create a sense of hope and community so no one has to face pancreatic cancer alone.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 7/23/2019
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Patient Prescription Drug Assistance Programs Listing, National Alliance for the Mentally Ill (NAMI)
3803 N Fairfax Dr., Ste. 100
Arlington, VA 22203
 Phone: 703-524-7600
Service Categories:
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Organization Name: National Alliance for the Mentally Ill (NAMI)
Address: 3803 N Fairfax Dr., Ste. 100
Arlington, VA 22203
Phone: 703-524-7600
Fax: 703-524-9094
Service Categories:
Prescription Drug Patient Assistance Programs
Specialized Information Resources
URL: https://www.nami.org/Find-Support/Living-with-a-Mental-Health-Condition/Getting-Help-Paying-for-Medications
Eligibility: Differs by specific pharmaceutical company.
Services Provided: Provides a list of pharmaceutical companies that offer medications through medication assistance programs to low-income individuals and families.
Provider Profiles: Internet-based resource
Original Source: MedHome Portal
Last Updated: 8/20/2018
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Patient Services Inc (PSI)
PO Box 5930
Midlothian, VA 23112
 Phone: 800-366-7741
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Transportation Expense Assistance
Address: PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Fax: 804-744-9388
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Transportation Expense Assistance
Email: psiops@uneedpsi.org
URL: https://www.patientservicesinc.org/
Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses. Assistance is focused on a limited number of around 20 diseases, and the list always changes.
Services Provided: Provides online disease and treatment information as well as limited financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and copayments. Available programs and specific illnesses are regularly updated. Financial assistance includes: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D co-insurance; providing travel assistance for transportation reimbursement.
Provider Profiles: Online resources
Original Source: MHP-Nationwide
Last Updated: 7/11/2019
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Patients Like Me.com
155 Second Street
Cambridge, MA 02141
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 155 Second Street
Cambridge, MA 02141
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: support@patientslikeme.com
URL: http://www.patientslikeme.com
Services Provided: Patients Like Me is a free health information sharing website for patients. Participants have the opportunity to share both personal stories and health data about their conditions; a network of 500,000 patients.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 3/21/2019
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Rethinkfirst.com
NY 10010
 Phone: 877-988-8871
Service Categories:
Behavioral Therapies
Specialized Information Resources
Address: NY 10010
Phone: 877-988-8871
Fax: 646-257-2926
Service Categories:
Behavioral Therapies
Specialized Information Resources
URL: https://www.rethinkfirst.com/Home/Parents
Eligibility: Special Education students
Services Provided: Online curriculum includes goal builders, lesson plans, and materials to teach Community, Home, Employment, Leisure and Social Skills to support special ed students. step-by-step ABA-based video lessons.
Provider Profiles: $59 to $114 / month, Free trial

web-based resource
Original Source: MedHome Portal
Last Updated: 7/10/2018
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Retinitis Pigmentosa International
PO Box 900
Woodland Hills, CA 91365
 Phone: 818-992-0500
Service Categories:
Specialized Information Resources
Address: PO Box 900
Woodland Hills, CA 91365
Phone: 818-992-0500
Fax: 818-992-3265
Service Categories:
Specialized Information Resources
Email: info@rpinternational.org
URL: http://www.rpinternational.org/
Services Provided: RP International seeks to fund and develop the Institute for Degenerative Eye Disease, for the funding and coordination of global research into degenerative blindness, and collection, evaluation and dissemination of information regarding its caused, treatment and availability of services.

Co-Parenting Workshops
Family Counseling
Information and Referral
Parent Support Groups
Peer Counseling
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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Rettsyndrome.org
4600 Devitt Drive
Cincinnati, OH 45246
 Phone: 800-818-7388
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Address: 4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Toll Free Phone: 800-818-7388
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Specialized Information Resources
Email: admin@rettsyndrome.org
URL: http://www.rettsyndrome.org
Services Provided: An organization comprised of parents and friends of those diagnosed with Rett syndrome, providing the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, and clinical trials. Resources include: Care Guides, Communication, Adaptive Equipment and Funding, School and Day Programs, Adolescence, Planning for the Future.
Original Source: MedHome Portal
Last Updated: 8/6/2019
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SMART Recovery
7304 Mentor Avenue Ste F
Mentor, OH 44060
 Phone: 440-951-5357
Service Categories:
Local Support Groups, Addiction
National Support Services, Addiction
Specialized Information Resources
Address: 7304 Mentor Avenue Ste F
Mentor, OH 44060
Phone: 440-951-5357
Toll Free Phone: 866-951-5357
Fax: 440-951-5358
Service Categories:
Local Support Groups, Addiction
National Support Services, Addiction
Specialized Information Resources
URL: https://www.smartrecovery.org/
Eligibility: Individuals and their families desiring recovery from substance abuse issues.
Services Provided: Self-Management and Recover Training (SMART) sponsors face-to-face and daily online addiction recovery meetings for all ages. Online message boards and 24/7 chat rooms are excellent forums to learn about SMART Recovery and obtain addiction recovery support. Registration at messageboard is required for online meetings. A web-based locator for local and on-line support groups.
Original Source: MHP-Nationwide
Last Updated: 7/2/2019
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Safe Kids Worldwide
1301 Pennsylvania Ave NW, Suite 1000
Washington, DC 20004
 Phone: 202-662-0600
Service Categories:
Specialized Information Resources
Address: 1301 Pennsylvania Ave NW, Suite 1000
Washington, DC 20004
Phone: 202-662-0600
Fax: 202-393-2072
Service Categories:
Specialized Information Resources
URL: https://www.safekids.org/
Services Provided: Safe Kids Worldwide provides general information on child safety and injury prevention. Education materials are available on such topics as car seats inspections, seat belt safety and helmet safety for bicyclists.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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Select Mutism Association
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address:
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Email: info@selectivemutism.org
URL: https://www.selectivemutism.org/
Eligibility: A child or adolescent with an anxiety disorder of selective mutism
Services Provided: SMG, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child or adolescent with the anxiety disorder known as Selective Mutism, characterized by a child or adolescent’s inability to speak in one or more social settings.
Original Source: MedHome Portal
Last Updated: 5/23/2018
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Service Dog Central
Service Categories:
Service Animals
Specialized Information Resources
Address:
Service Categories:
Service Animals
Specialized Information Resources
URL: http://www.servicedogcentral.org/content/
Services Provided: A website resource center for education and location of services related to service dogs.
Original Source: MedHome Portal
Last Updated: 5/24/2018
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Sickle Cell Disease National Resource Directory (CDC), Sickle Cell Disease Association of America, Inc.
231 East Baltimore Street, Suite 800
Baltimore, MD 21202
Service Categories:
National Support Services, Disab/Diag
Sickle Cell Disease Centers
Specialized Information Resources
Organization Name: Sickle Cell Disease Association of America, Inc.
Address: 231 East Baltimore Street, Suite 800
Baltimore, MD 21202
Toll Free Phone: 800-232-4636
Service Categories:
National Support Services, Disab/Diag
Sickle Cell Disease Centers
Specialized Information Resources
Email: cdcinfo@cdc.gov
URL: https://www.cdc.gov/ncbddd/sicklecell/map/map-nationalresourcedirectory.html
Services Provided: The Sickle Cell Disease National Resource Directory is a listing of national agencies, specialty care centers, and community-based organizations that provide services and resources for people affected by sickle cell disease (SCD). The goal of this directory is to help people find SCD services and resources. This directory is sorted by national and state resources and listed in A-Z order. Within each state, the resources are listed by type: Providers/Sickle Cell Centers, Nonprofits/Associations/Foundations, and Support Groups. In many cases, organizations offer both clinical and non-clinical resources and services. When making contact, ask about other services that may be offered such as support groups and social services.
Provider Profiles: National organization, http://www.sicklecelldisease.org/
Internet resource
Original Source: MedHome Portal
Last Updated: 1/10/2019
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Solve ME/CFS Initiative
5455 Wilshire Blvd, Suite 1903
Los Angeles, CA 90036-0007
 Phone: 704-364-0016
Service Categories:
Specialized Information Resources
Address: 5455 Wilshire Blvd, Suite 1903
Los Angeles, CA 90036-0007
Phone: 704-364-0016
Service Categories:
Specialized Information Resources
URL: https://solvecfs.org/
Services Provided: Dedicated to myalgic encephalomyelitis ME/Chronic Fatigue Syndrome CFS also known as chronic fatigue and immune dysfunction syndrome CFIDS. Our mission is to make ME/CFS widely understood, diagnosable, and treatable. We will do this by stimulating participatory, patient centered research aimed at the early detection, objective diagnosis and effective treatment of ME/CFS through expanded public, private and commercial investment.

Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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Stuttering Foundation of America
1805 Moriah Woods Blvd Suite 3
Memphis, TN 381177119
 Phone: 901-761-0343
Service Categories:
Specialized Information Resources
Address: 1805 Moriah Woods Blvd Suite 3
Memphis, TN 381177119
Phone: 901-761-0343
Toll Free Phone: 800-992-9392
Fax: 901-761-0484
Service Categories:
Specialized Information Resources
Email: jwarner@tn.stutteringhelp.org
URL: https://www.stutteringhelp.org/
Wheelchair Accessible: Not Applicable
Services Provided: Provides resources, services, and support to those who stutter and their families, as well as support for research into the causes of stuttering.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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The Bazelon Center for Mental Health Law
1101 15th Street NW, Suite 1212
Washington, DC 20005
 Phone: 202-467-5730
Service Categories:
Legal Services, General
Specialized Information Resources
Address: 1101 15th Street NW, Suite 1212
Washington, DC 20005
Phone: 202-467-5730
Toll Free Phone: 202-467-4232
Fax: 202-223-0409
Service Categories:
Legal Services, General
Specialized Information Resources
URL: http://www.bazelon.org
Services Provided: The mission of the Judge David L. Bazelon Center for Mental Health Law is to protect and advance the rights of adults and children who have mental disabilities. The Bazelon Center envisions an America where people who have mental illnesses or developmental disabilities exercise their own life choices and have access to the resources that enable them to participate fully in their communities.

Information and Referral
Library Services
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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The National Fragile X Foundation
1861 International Drive Suite 200
McLean, VA 22102
 Phone: 202-747-6210
Service Categories:
Specialized Information Resources
Address: 1861 International Drive Suite 200
McLean, VA 22102
Phone: 202-747-6210
Toll Free Phone: 800-688-8765
Fax: 202-747-6208
Service Categories:
Specialized Information Resources
URL: https://fragilex.org/
Services Provided: The National Fragile X Foundation unites the Fragile X community to Enrich lives through educational and emotional support Promote public and professional awareness Advance research toward improved treatments and a cure for Fragile X.

Disease/Disability Information
Information and Referral
Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
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Ticket to Work, Social Security Administration
Office of Public Inquiries, Windsor Park Building
6401 Security Blvd.
Baltimore, MD 21235
Service Categories:
Disability Related Employment Programs
Specialized Information Resources
Organization Name: Social Security Administration
Address: Office of Public Inquiries, Windsor Park Building
6401 Security Blvd.
Baltimore, MD 21235
TDD: 800-325-0778
Toll Free Phone: 800-772-1213
Service Categories:
Disability Related Employment Programs
Specialized Information Resources
URL: http://www.ssa.gov/work/
Services Provided: This site provides information for people with disabilities who are SSI or SSDI recipients and want to work.
Provider Profiles: (SSI)
Original Source: MedHome Portal
Last Updated: 3/22/2018
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United Network for Organ Sharing (UNOS)
700 North 4th Street
Richmond, VA 23219
 Phone: 888-894-6361
Service Categories:
Specialized Information Resources
Address: 700 North 4th Street
Richmond, VA 23219
Phone: 888-894-6361
Toll Free Phone: 888-894-6361
Fax: 804-782-4817
Service Categories:
Specialized Information Resources
URL: http://www.unos.org/
Eligibility: Contact for specific information.
Services Provided: National patient hotline for organ transplantation information. Donor cards, booklets, brochures and lists of transplant centers are available. Patient information packets on specific organs are available.
Original Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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Vanderbilt Kennedy Center
110 Magnolia Circle
Nashville, TN 37203
 Phone: 615-322-8240
Service Categories:
Specialized Information Resources
Address: 110 Magnolia Circle
Nashville, TN 37203
Phone: 615-322-8240
Service Categories:
Specialized Information Resources
URL: http://vkc.mc.vanderbilt.edu/vkc/resources/
Eligibility: Individuals with disabilities
Services Provided: Resources for individuals with disabilities: Topical List, Printable Resources, Web Resources, Tip Sheets, Video Resources and Toolkit for IDD at www.vkc.mc.vanderbilt.edu/etoolkit/ with Health Watch Tables.
Original Source: MedHome Portal
Last Updated: 5/9/2018
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Virtual VRI
PO Box 25268
Colorado Springs, CO 80936
 Phone: 719-344-2274
Service Categories:
Interpreters
Specialized Information Resources
Address: PO Box 25268
Colorado Springs, CO 80936
Phone: 719-344-2274
Toll Free Phone: 866-440-9140 xe
Service Categories:
Interpreters
Specialized Information Resources
URL: http://www.virtualvri.com
Eligibility: Deaf and hard of hearing individuals
Services Provided: Video Remote Interpreting is a cutting edge “green” way of providing Sign Language interpreting. All that is required is a computer/webcam, access to high speed internet and to download free webconferencing software. The hearing employer, doctor, counselor, school etc., pays for the service to be in compliance with the Americans with Disabilities Act.
Provider Profiles: computer/webcam based service
Original Source: MedHome Portal
Last Updated: 8/1/2018
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When We Travel--Accessibility
Service Categories:
Accessible Travel Information
Specialized Information Resources
Address:
Service Categories:
Accessible Travel Information
Specialized Information Resources
Email: reservations@wctravel.com
URL: http://www.whenwetravel.com/travel_destination_hotel/wheelchair_accessible_hotels.jsp
Wheelchair Accessible: Yes
Services Provided: Accessibility services including tourist attractions, hotels, restaurants, bed & breakfasts, RV Parks. Searchable listing of wheelchair accessible hotels worldwide. Online services only.
Provider Profiles: Email addresses are as follows: to cancel or modify a reservation contact customerservice@wctravel.com; for group rates contact group@whenwetravel.com; for problems registering, submitting content or a broken page contact support@whenwetravel.com.
Original Source: MedHome Portal
Last Updated: 8/1/2018
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