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National Support Services, Disab/Diag

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Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, help them experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (AIRS PH-6200.1850 Disability Awareness Programs)

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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.

22q Family Foundation
725 Clubhouse Drive
Aptos, CA 95003
 Phone: 831-200-4227
Service Categories:
National Support Services, Disab/Diag
Address: 725 Clubhouse Drive
Aptos, CA 95003
Phone: 831-200-4227
Service Categories:
National Support Services, Disab/Diag
Email: info@22qfamilyfoundation.org
URL: https://22qfamilyfoundation.org/
Services Provided: Dedicated to raising awareness for 22q11.2 Deletion Syndrome while connecting, supporting and offering accurate information to families affected by the disorder. A locator map for family connections, support groups and clinics.
Provider Profiles: Executive Director Lindsey Garcia
Source: Medical Home Portal
Last Updated: 8/23/2018
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Alexander Graham Bell Assoc for the Deaf & Hard of Hearing
3417 Volta Place NW
Washington, DC 20007
 Phone: 202-337-5220
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Scholarships & Financial Aid
Speech - Language Pathologists
Address: 3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Scholarships & Financial Aid
Speech - Language Pathologists
Email: info@agbell.org
URL: https://www.agbell.org/
Eligibility: Individuals who are deaf or hard of hearing.
Services Provided: A resource center on hearing loss and spoken language approaches and related issues. Promotes opportunities and rights of individuals who are deaf or hard of hearing to learn to use, maintain, and improve all aspects of their verbal communication, including their abilities to use residual hearing and process both spoken and written language. Offers scholarship/ financial award opportunities, membership, information, and publications.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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American Foundation for Suicide Prevention
199 Water Street 11th Floor
New York, NY 10038
 Phone: 212-363-3500
Service Categories:
National Support Services, Disab/Diag
Address: 199 Water Street 11th Floor
New York, NY 10038
Phone: 212-363-3500
Toll Free Phone: 888-333-2377
Service Categories:
National Support Services, Disab/Diag
Email: info@afsp.org
URL: https://afsp.org/
Services Provided: AFSP raises awareness, funds scientific research and provides resources and aid to those affected by suicide. AFSP has local chapters in all 50 states with programs and events nationwide. Search for chapters on website.
Source: MHP-Nationwide
Last Updated: 11/11/2019
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American Society for Deaf Children (ASDC)
PO Box 3355
Gettysburg, PA 17325
 Phone: 717-334-7992
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Address: PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Toll Free Phone: 800-942-2732
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Email: asdc@deafchildren.org
URL: https://deafchildren.org/
Services Provided: Families and professionals committed to educating, empowering, and supporting parents and families of children who are deaf or hard-of-hearing. Helps find meaningful communication options, particularly through the competent use of sign language, in their home, school, or community.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Amyotrophic Lateral Sclerosis Association (ALS Association)
1275 K Street NW Suite 250
Washington, DC 20005
 Phone: 202-407-8580
Service Categories:
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
Service Categories:
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.

Find a local chapter, Certified Treatment Centers of Excellence, or support group: [http://www.alsa.org/community/ ALS Association In Your Community]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
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Angelman Syndrome Foundation
75 Executive Drive, Suite 327
Aurora, IL 60504
 Phone: 630-978-4245
Service Categories:
National Support Services, Disab/Diag
Address: 75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245
Toll Free Phone: 800-432-6435
Service Categories:
National Support Services, Disab/Diag
URL: https://www.angelman.org/
Services Provided: Our mission is to raise awareness and provide a resource and support for individuals and families living with Angelman Syndrome. Offers a Family Resource Team to help find needed resources; educational programs and Angelman Syndrome Resources. Regional representatives provide networking and referrals in your area.
Source: Medical Home Portal
Last Updated: 8/6/2019
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Anxiety and Depression Association of America
8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
 Phone: 240-485-1001
Service Categories:
National Support Services, Disab/Diag
Address: 8701 Georgia Ave., Suite Unit 412
Silver Spring, MD 20910
Phone: 240-485-1001
Service Categories:
National Support Services, Disab/Diag
URL: https://adaa.org/
Services Provided: ADAA is a national nonprofit organization dedicated to the prevention, treatment, and cure of anxiety, OCD, PTSD, depression, and related disorders and to improving the lives of all people who suffer from them.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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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
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.
Source: Medical Home Portal
Last Updated: 8/6/2019
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Association for X and Y Variations (AXYS)
PO Box 659
Paoli, PA 19301
 Phone: 888-999-9428
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: PO Box 659
Paoli, PA 19301
Phone: 888-999-9428
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Email: info@genetic.org
URL: https://genetic.org/
Services Provided: Information about chromosome variation for for parents and parents-to-be, individuals, and medical professionals.

Services include:
-Helpline: 888-999-9428 or helpline@genetic.org
-Support meetings, conferences, and webinars
-Information about chromosome variations
-[https://genetic.org/professional-directory-info/ Professional Directory]
-[https://genetic.org/im-adult-looking-answers/clinics/ AXYS Clinic and Research Consortium] clinic list
-[https://genetic.org/im-adult-looking-answers/support-groups/ Support Groups]
Source: Nationwide Suggest Providers Queue
Last Updated: 2/7/2020
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Asthma, National Environmental Education Foundation (NEEF)
4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Service Categories:
National Support Services, Disab/Diag
Organization Name: National Environmental Education Foundation (NEEF)
(Show others in Organization)
Address: 4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Service Categories:
National Support Services, Disab/Diag
URL: https://www.neefusa.org/health/asthma
Eligibility: Pediatric asthma, diabetes or obesity
Services Provided: Providing resources to healthcare providers on environmental health concerns and benefits. Asthma study,"Integrating environmental management of asthma into pediatric health care."
Source: Medical Home Portal
Last Updated: 10/16/2018
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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: https://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.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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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.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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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
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://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.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Beach Center on Disability, University of Kansas
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
 Phone: 785-864-7600
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Organization Name: University of Kansas
(Show others in Organization)
Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
URL: https://beachcenter.lsi.ku.edu/
Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.
Provider Profiles: Based at the University of Kansas.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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CDC National Prevention Information Network
3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
 Phone: 800-232-4636
Service Categories:
National Support Services, Disab/Diag
Public Health Services
Address: 3565 Piedmont Rd, NE Bldg 3, Suite 700
Atlanta, GA 30305
Phone: 800-232-4636
TDD: 888-232-6348
Toll Free Phone: 800-232-4636
Service Categories:
National Support Services, Disab/Diag
Public Health Services
URL: https://npin.cdc.gov/
Services Provided: The CDC National Prevention Information Network (NPIN) is the U.S. reference, referral and distribution service for information on HIV/AIDS, viral hepatitis, sexually transmitted diseases (STDs) and tuberculosis (TB). NPIN produces, collects, catalogs, processes, stocks and disseminates materials and information on HIV/AIDS, viral hepatitis, STDs and TB to organizations and people working in those disease fields in international, national, state and local settings. All NPIN services are designed to facilitate sharing of information and resources on education and prevention services, published materials, research findings and trends among users.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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Camp Kesem Nationwide
10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
 Phone: 260-225-3736
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
Address: 10586 West Pico Boulevard, Unit 196
Los Angeles, CA 90064
Phone: 260-225-3736
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
Email: info@kesem.org
URL: https://www.campkesem.org/
Eligibility: children with parents with cancer
Services Provided: Kesem is a nationwide community, driven by passionate college student leaders, that supports children through and beyond their parent’s cancer. Offering innovative, fun-­filled programs that foster a lasting community, we aim to ensure that every child impacted by a parent’s cancer is never alone.
Provider Profiles: Camp locator on website
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Cancer Care
275 Seventh Avenue
New York, NY 10001
 Phone: 800-813-4673
Service Categories:
Disability Awareness Programs
Medical Care Expense Assistance
National Support Services, Disab/Diag
Address: 275 Seventh Avenue
New York, NY 10001
Phone: 800-813-4673
Toll Free Phone: 800-813-4673
Service Categories:
Disability Awareness Programs
Medical Care Expense Assistance
National Support Services, Disab/Diag
URL: https://www.cancercare.org/
Eligibility: Cancer patients, survivors and caregivers. Liimited grants for certain expenses related to cancer treatment.
Services Provided: Provides online, telephone and in-person counseling, support groups, educational workshops, publications, financial and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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CdLS Foundation, Cornelia de Lange Syndrome Foundation
30 Tower Lane
Avon, CT 06001
 Phone: 860-753-2357
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Organization Name: Cornelia de Lange Syndrome Foundation
(Show others in Organization)
Address: 30 Tower Lane
Avon, CT 06001
Phone: 860-753-2357
Toll Free Phone: 800-223-8355
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
URL: https://www.cdlsusa.org/additional-family-resources/
Services Provided: A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.
Provider Profiles: M - F 8:30 - 5 ET
Source: MHP-Nationwide
Last Updated: 11/27/2019
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Center for Parent Information and Resources
35 Halsey Street 4th Floor
Newark, NJ 07102
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Address: 35 Halsey Street 4th Floor
Newark, NJ 07102
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Email: jwilson@spannj.org
URL: https://www.parentcenterhub.org/
Eligibility: Those who serve families of children with disabilities.
Services Provided: Serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Child Neurology Foundation
201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Address: 201 Chicago Avenue, Unit 200
Minneapolis, MN 55415
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://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
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Children's Craniofacial Association
13140 Coit Road, Suite 517
Dallas, TX 75240
 Phone: 214-570-9099
Service Categories:
National Support Services, Disab/Diag
Transportation Expense Assistance
Address: 13140 Coit Road, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Toll Free Phone: 800-535-3646
Service Categories:
National Support Services, Disab/Diag
Transportation Expense Assistance
Email: areeves@ccakids.com
URL: https://www.ccakids.org/
Eligibility: People with facial differences and their families
Services Provided: Children's Craniofacial Association is a national nonprofit organization, dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. Annual Family Retreat & Educational Symposium is held each June to provide an opportunity to interact with others who have endured similar experiences.
Provider Profiles: Annual Family Retreat & Educational Symposium June 28 - July 1, 2018, Little America Hotel, Salt Lake City. Registration $75 - $100 per family. Scholarships available.
Source: MHP-Nationwide
Last Updated: 11/19/2019
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Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904
 Phone: 212-344-6633
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
Address: 120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Toll Free Phone: 800-323-7938
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
Email: info@ctf.org
URL: https://www.ctf.org/
Services Provided: Ending neurofibromatosis through research. Patient Engagement program, meaning the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community. A NF Clinic Network by state.
Provider Profiles: NF Camp is the annual summer camp of the Children's Tumor Foundation, dedicated to teens and young adults living with neurofibromatosis (NF). For over 20 years we have hosted this week-long experience for teens and young adults ages 12 to 25. NF Camp takes place on the third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah. Application on CTF website.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Clubhouse International
747 Third Avenue, 2nd floor
New York, NY 10017
 Phone: 212-582-0343
Service Categories:
Mental Health, Other Services
National Support Services, Disab/Diag
Address: 747 Third Avenue, 2nd floor
New York, NY 10017
Phone: 212-582-0343
Service Categories:
Mental Health, Other Services
National Support Services, Disab/Diag
Email: info@clubhouse-intl.org
URL: https://clubhouse-intl.org/
Services Provided: A Clubhouse is a community of people with mental illness who are working together toward a common goal, to get their lives back. Clubhouse International helps open new Clubhouses, accredits Clubhouses, trains and mentors new and mature Clubhouses, educates the public, advocates for government funding, and conducts research.
Source: MHP-Nationwide
Last Updated: 7/17/2019
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Crohn's & Colitis Foundation
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: https://www.crohnscolitisfoundation.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.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/7/2020
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Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
 Phone: 800-886-1762
Service Categories:
Clinical Trials Research
Medical Equipment/Supplies
National Support Services, Disab/Diag
Address: 925 Busse Road
Elk Grove Village, IL 60007
Phone: 800-886-1762
Toll Free Phone: 800-886-1762
Service Categories:
Clinical Trials Research
Medical Equipment/Supplies
National Support Services, Disab/Diag
Email: info@curesma.org
URL: https://www.curesma.org/
Eligibility: Individuals with spinal muscular atrophy (SMA)
Services Provided: Funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides families the support they need. Local and national programs. An equipment pool loans medical equipment free of charge. Annual conference.

Web-based location finder for support in your area.
Source: MHP-Nationwide
Last Updated: 9/25/2019
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CureDuchenne
1400 Quail Street, Suite 110
Newport Beach, CA 92660
 Phone: 949-872-2552
Service Categories:
National Support Services, Disab/Diag
Address: 1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Service Categories:
National Support Services, Disab/Diag
Email: info@cureduchenne.org
URL: https://www.cureduchenne.org/
Services Provided: Serving Duchenne patients through free education for parents, siblings, caregivers and healthcare professionals who manage care for those with Duchenne. A web locator for therapy services.
Source: Medical Home Portal
Last Updated: 8/16/2018
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Cystic Fibrosis Foundation
4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
 Phone: 301-951-4422
Service Categories:
Cystic Fibrosis Clinics
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Sweat Testing
Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Service Categories:
Cystic Fibrosis Clinics
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Sweat Testing
URL: https://www.cff.org/
Services Provided: The mission of the Cystic Fibrosis (CF) Foundation is to cure cystic fibrosis and provie all people with CF the opportunity to lead long, fulfilling lives.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is 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.
Source: MHP-Nationwide
Last Updated: 2/7/2020
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Depression and Bipolar Support Alliance
55 East Jackson Blvd., Suite 490
Chicago, IL 60604
 Phone: 800-826-3632
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 55 East Jackson Blvd., Suite 490
Chicago, IL 60604
Phone: 800-826-3632
Toll Free Phone: 800-826-3632
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
URL: https://www.dbsalliance.org/
Eligibility: Contact for specific information.
Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.
Provider Profiles: National
Source: MHP-Nationwide
Last Updated: 1/17/2020
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FG Syndrome Family Alliance
922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330
 Phone: 617-577-9050
Service Categories:
National Support Services, Disab/Diag
Address: 922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330
Phone: 617-577-9050
Service Categories:
National Support Services, Disab/Diag
URL: https://www.facebook.com/groups/17911785825/
Eligibility: Families with FG Syndrome
Services Provided: Facebook page to connect to other families impacted by FG Syndrome.
Source: Medical Home Portal
Last Updated: 8/30/2018
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Fabry Community, Sanofi Genzyme
Cambridge, MA
 Phone: 617-768-9000
Service Categories:
National Support Services, Disab/Diag
Organization Name: Sanofi Genzyme
(Show others in Organization)
Address: Cambridge, MA
Phone: 617-768-9000
Toll Free Phone: 800-745-4447
Service Categories:
National Support Services, Disab/Diag
URL: https://www.discoverfabry.com/resources-and-support
Languages Spoken: Spanish
Eligibility: For patients and healthcare professionals
Services Provided: Offering care management by the Sanofi Genzyme drug company. Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company.
Source: MHP-Nationwide
Last Updated: 4/23/2019
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Fabry Support & Information Group (FSIG)
108 NE 2nd St
PO Box 510
Concordia, MO 64020
 Phone: 660-463-1355
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 108 NE 2nd St
PO Box 510
Concordia, MO 64020
Phone: 660-463-1355
Toll Free Phone: 866-303-2279
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Email: info@fabry.org
URL: https://fabry.org/
Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.
Source: MHP-Nationwide
Last Updated: 1/31/2020
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Family Voices
PO Box 37188
Albuquerque, NM 87176
 Phone: 505-872-4774
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Address: PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Toll Free Phone: 888-835-5669
Service Categories:
Family Support Services
National Support Services, Disab/Diag
URL: https://familyvoices.org/
Services Provided: Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.
Provider Profiles: Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Federation of Families for Children's Mental Health
9605 Medical Center Dr Suite 280
Rockville, MD 20850
 Phone: 240-403-1901
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Address: 9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Service Categories:
Family Support Services
National Support Services, Disab/Diag
URL: https://www.ffcmh.org/
Services Provided: We are a national family-run organization dedicated exclusively to helping children with mental health needs and their families achieve a better quality of life. Provide leadership to develop and sustain a nationwide network of family-run organizations. Focus the passion and cultural diversity of our membership to be a potent force for changing how systems respond to children with mental health needs and their families. Help policy-makers, agencies, and providers become more effective in delivering services and supports that foster healthy emotional development for all children.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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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
(Show others in Organization)
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
Source: Medical Home Portal
Last Updated: 8/8/2018
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Five P Minus Society, 5p- (five p minus) Society
6229 Eckleson Street
Lakewood, CA 90713
 Phone: 888-970-0777
Service Categories:
Disability Awareness Programs
Local Support Groups, Disability/Diag
National Support Services, Disab/Diag
Organization Name: 5p- (five p minus) Society
(Show others in Organization)
Address: 6229 Eckleson Street
Lakewood, CA 90713
Phone: 888-970-0777
Toll Free Phone: 888-970-0777
Service Categories:
Disability Awareness Programs
Local Support Groups, Disability/Diag
National Support Services, Disab/Diag
URL: https://fivepminus.org/
Eligibility: Parents and health care providers of children with Cri Du Chat syndrome.
Services Provided: Provides information, communication, and support groups to families having a child with 5P- Syndrome and to spread awareness and education to the families and their service providers. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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GBS/CIDP Foundation International
Wynnewood, PA 19096
 Phone: 610-667-0131
Service Categories:
National Support Services, Disab/Diag
Address: Wynnewood, PA 19096
Phone: 610-667-0131
Toll Free Phone: 866-224-3301
Service Categories:
National Support Services, Disab/Diag
URL: https://www.gbs-cidp.org/
Services Provided: Information about Guillain-Barre Syndrome an inflammatory disorder in which your body's immune system attacks the nerves outside the brain and spinal cord; and Chronic Inflammatory Demyelinating Polyneuropathy (CID).

Co-Parenting Workshops
Family Support Centers/Outreach
Parent Support Groups
Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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GLMA Provider Directory, GLMA Health Professionals Advancing LGBTQ Equality
1133 19th Street, NW Suite 302
Washington, DC 20036
 Phone: 202-600-8037
Service Categories:
National Support Services, Disab/Diag
Organization Name: GLMA Health Professionals Advancing LGBTQ Equality
(Show others in Organization)
Address: 1133 19th Street, NW Suite 302
Washington, DC 20036
Phone: 202-600-8037
Service Categories:
National Support Services, Disab/Diag
Email: info@glma.org
URL: http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageId=939&grandparentID=534&parentID=938&nodeID=1
Services Provided: Are you lesbian, gay, bisexual, transgender or queer and looking for a healthcare professional you can trust?

GLMA’s online Provider Directory can help. Search for primary care providers, specialists, therapists, dentists and other health professionals in your area.

The service is free and you do not need to register.
Source: MHP-Nationwide
Last Updated: 5/9/2019
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Genetic Alliance
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
 Phone: 202-966-5557
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Address: 4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
URL: http://www.geneticalliance.org/
Services Provided: A partnership of self-help groups and professionals, Genetic Alliance has developed a series of programs designed to increase the visibility of genetics and advocacy, establish strong networks and advance important campaigns, including community-based family history. Current programs include: Advocacy ATLAS, Community Centered Family Health History, Consumer Focused Newborn Screening, and Access to Credible Genetics Resources Network
Source: Medical Home Portal
Last Updated: 12/18/2017
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Genetic and Rare Diseases Information Center (GARD), NIH National Center for Advancing Translational Sciences
PO Box 8126
Gaithersburg, MD 20898-8126
 Phone: 888-205-2311
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
Organization Name: NIH National Center for Advancing Translational Sciences
(Show others in Organization)
Address: PO Box 8126
Gaithersburg, MD 20898-8126
Phone: 888-205-2311
Toll Free Phone: 888-205-2311
Service Categories:
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://rarediseases.info.nih.gov/
Languages Spoken: Spanish
Services Provided: GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic disease. In addition to website-based information you may contact a GARD Information Specialist. Also, GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often ask us.
Provider Profiles: GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).
Source: Nationwide Suggest Providers Queue
Last Updated: 9/12/2019
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GiGi's Playhouse National, Down Syndrome Achievement Centers
2350 West Higgins Road
Hoffman Estates, IL 60169
 Phone: 847-885-6147
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Organization Name: Down Syndrome Achievement Centers
(Show others in Organization)
Address: 2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Service Categories:
Disability Awareness Programs
National Support Services, Disab/Diag
Email: info@gigisplayhouse.org
URL: https://gigisplayhouse.org/
Eligibility: Individuals with Down syndrome, their families and the community
Services Provided: Through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community, we offer free therapeutic and educational programming to individuals with Down syndrome and their families. At GiGi’s Playhouse families are never alone. From a prenatal diagnosis to career skills, we make a lifetime commitment to remain by their side. Families are empowered with all the tools their child needs to succeed!
Provider Profiles: Over 30 locations across the United States and Mexico and 200 inquiries to start new locations all over the world.
Source: MHP-Nationwide
Last Updated: 9/25/2019
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Glut1 Deficiency Foundation
PO Box 737
Owingsville, KY
Service Categories:
National Support Services, Disab/Diag
Address: PO Box 737
Owingsville, KY
Service Categories:
National Support Services, Disab/Diag
Email: info@g1dfoundation.org
URL: https://www.g1dfoundation.org/
Services Provided: A nonprofit family organization with a mission of: increased awareness, improved education, advocacy for patients and families, support and funding for research
Website resources and support
Source: Medical Home Portal
Last Updated: 8/21/2018
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Help Me Grow National Center
Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106
 Phone: 860-837-6232
Service Categories:
National Support Services, Disab/Diag
Address: Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106
Phone: 860-837-6232
Service Categories:
National Support Services, Disab/Diag
URL: https://helpmegrownational.org/
Services Provided: The Help Me Grow National Center serves as a national resource to support the implementation of Help Me Grow systems throughout the country. The Center provides technical support to states and communities to operationalize efforts to plan, build, and enhance a comprehensive and integrated State Help Me Grow system, ensuring the development of robust, effective early childhood systems that promote the healthy development of every child
Provider Profiles: Help Me Grow National Center is a program of Connecticut Children's Office for Community Child Health
Source: Medical Home Portal
Last Updated: 10/23/2018
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Hydrocephalus Association
4340 East West Highway, Suite 905
Bethesda, MD 20814
 Phone: 301-202-3811
Service Categories:
National Support Services, Disab/Diag
Address: 4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
TDD: 888-598-3789
Service Categories:
National Support Services, Disab/Diag
URL: https://www.hydroassoc.org/
Services Provided: Education, research, support and advocacy for hydrocephalus.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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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
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Email: frontdesk@primaryimmune.org
URL: https://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.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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International Dyslexia Association
40 York Road, 4th Floor
Baltimore, MD 21204
 Phone: 410-296-0232
Service Categories:
National Support Services, Disab/Diag
Address: 40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Service Categories:
National Support Services, Disab/Diag
Email: info@interdys.org
URL: https://dyslexiaida.org/
Services Provided: Information handbook, annual conference, scholarships for teachers and for parents to attend conference, listing of other grants, and provider lists by state.
Source: Medical Home Portal
Last Updated: 7/23/2019
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International Foundation for Research and Education on Depression (iFred), National Foundation for Depressive Illness, Inc. (NFDI)
PO Box 17598
Baltimore, MD 21297-1598
 Phone: 800-239-1265
Service Categories:
National Support Services, Disab/Diag
Organization Name: National Foundation for Depressive Illness, Inc. (NFDI)
(Show others in Organization)
Address: PO Box 17598
Baltimore, MD 21297-1598
Phone: 800-239-1265
Service Categories:
National Support Services, Disab/Diag
Email: info@ifred.org
URL: http://www.depression.org
Services Provided: The International Foundation for Research and Education on Depression (iFred) is a 501(c)3 organization dedicated to researching causes of depression, to supporting those dealing with depression, and to combating the stigma associated with depression.
Source: Medical Home Portal
Last Updated: 8/6/2018
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Invisible Disabilities Association
PO Box 4067
Parker, CO 80134
Service Categories:
National Support Services, Disab/Diag
Address: PO Box 4067
Parker, CO 80134
Service Categories:
National Support Services, Disab/Diag
URL: https://invisibledisabilities.org/
Eligibility: Invisible disabilities
Services Provided: The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Online support group community.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Jed Foundation (JED)
6 East 39th Street, Suite 1204
New York, NY 10016
 Phone: 212-647-7544
Service Categories:
Crisis Helplines/Hotlines
National Support Services, Disab/Diag
Address: 6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Toll Free Phone: 800-273-8255
Service Categories:
Crisis Helplines/Hotlines
National Support Services, Disab/Diag
URL: https://www.jedfoundation.org/
Eligibility: young adults with suicidal thoughts
Services Provided: Suicide prevention and mental illness; equipping America’s teens and young adults with the skills and support they need to grow into healthy, thriving adults.
Help schools evaluate and strengthen their mental health, substance abuse and suicide prevention programs and systems to safeguard individual and community health.
Develop expert resources and create powerful partnerships to ensure more teens and young adults get access to the resources and support they need to navigate life’s challenges.
Educate and equip students, families and communities to know when and how to support others who are in distress or struggling with a mental health issue.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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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: https://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.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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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
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.
Source: MHP-Nationwide
Last Updated: 8/8/2019
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Lighthouse Guild - Parent Support Network
250 West 64th Street
New York, NY 10023
Service Categories:
National Support Services, Disab/Diag
Address: 250 West 64th Street
New York, NY 10023
Toll Free Phone: 800-562-6265
Service Categories:
National Support Services, Disab/Diag
URL: https://www.lighthouseguild.org/patients-families/tele-support-services/
Eligibility: For parents of children who are blind
Wheelchair Accessible: Lowered Elevator Controls
Services Provided: Along with our acclaimed national tele-support network, we offer a wealth of support services for parents to help you help your child become the best he or she can be.

Information and Referral
Library Services
Parent Support Groups
Source: Help Me Grow Utah via United Way 2-1-1
Last Updated: 11/7/2019
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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
(Show others in Organization)
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
Source: Medical Home Portal
Last Updated: 7/26/2018
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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
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.
Source: MHP-Nationwide
Last Updated: 8/6/2019
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Madison House Autism Foundation
15201 Shady Grove Road, Suite 200
Rockville, MD 20850
 Phone: 204-246-7140
Service Categories:
National Support Services, Disab/Diag
Address: 15201 Shady Grove Road, Suite 200
Rockville, MD 20850
Phone: 204-246-7140
Service Categories:
National Support Services, Disab/Diag
URL: http://www.madisonhouseautism.org/
Eligibility: Autism
Services Provided: Programming is designed to not only create awareness of the lifespan issues facing adults, but to also help those on the spectrum make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.
Source: Medical Home Portal
Last Updated: 8/6/2018
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Magic Foundation
6645 West North Avenue
Oak Park, IL 60302
 Phone: 708-383-0808
Service Categories:
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
Address: 6645 West North Avenue
Oak Park, IL 60302
Phone: 708-383-0808
Toll Free Phone: 800-362-4423
Service Categories:
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
URL: https://www.magicfoundation.org/Financial-Assistance/
Eligibility: Children with endocrine disorders.
Services Provided: The Magic Foundation provides information, resources, and an insurance and appeals assistance program, designed to assist members in the insurance appeals process as funding allows. Programs include: Pharmaceutical Company Patient Assistance Programs, Co-Pay Assistance Foundation, Insurance Appeals.
Provider Profiles: An organization of parents of children with endocrine disorders.
Source: Medical Home Portal
Last Updated: 8/1/2018
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Maple Syrup Urine Disease Family Support Group
9517 Big Bear Ave
Powell, OH 43065
 Phone: 740-972-5619
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 9517 Big Bear Ave
Powell, OH 43065
Phone: 740-972-5619
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
URL: http://www.msud-support.org/
Eligibility: Any persons with interest in MSUD
Services Provided: The MSUD Family Support Group membership includes families and professionals worldwide.

The MSUD Family Support Group is dedicated to:
• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/24/2020
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Mental Health America
500 Montgomery Street, Suite 820
Alexandria, VA 22314
 Phone: 703-684-7722
Service Categories:
National Support Services, Disab/Diag
Address: 500 Montgomery Street, Suite 820
Alexandria, VA 22314
Phone: 703-684-7722
TDD: 800-433-5959
Toll Free Phone: 800-969-6642
Service Categories:
National Support Services, Disab/Diag
Email: info@mentalhealthamerica.net
URL: https://www.mhanational.org/programs
Eligibility: mental health
Services Provided: Programs include: public policy and advocacy at the federal, state, and regional levels; education and outreach with screening tools and research; and information and referral services.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Mom2Mom helpline, Rutgers' University Behavioral Health Care
New Brunswick, NJ
 Phone: 877-914-6662 Crisis Line: 877-914-6662
Service Categories:
Crisis Helplines/Hotlines
National Support Services, Disab/Diag
Organization Name: Rutgers' University Behavioral Health Care
(Show others in Organization)
Address: New Brunswick, NJ
Phone: 877-914-6662
Crisis Line: 877-914-6662
Toll Free Phone: 877-914-6662
Service Categories:
Crisis Helplines/Hotlines
National Support Services, Disab/Diag
URL: http://www.mom2mom.us.com/
Languages Spoken: Spanish
Eligibility: Mothers of children with special needs
Services Provided: 24/7 peer-support helpline for mothers of children with special needs. Offers peer support, clinical assessment, database of trained service providers, support groups.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Multiple Sclerosis Associations of America
375 Kings Highway North
Cherry Hill, NJ 08034
Service Categories:
Education About Disabilities/Diagnoses
Financial Assistance, Other
National Support Services, Disab/Diag
Address: 375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Service Categories:
Education About Disabilities/Diagnoses
Financial Assistance, Other
National Support Services, Disab/Diag
Email: MSquestions@mymsaa.org
URL: https://mymsaa.org/
Eligibility: Individuals with MS
Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application
Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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Multiple Sclerosis Foundation (MSFOCUS)
6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
URL: https://msfocus.org/
Wheelchair Accessible: Ramps
Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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Muscular Dystrophy Association
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.
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Myasthenia Gravis Foundation of America Inc.
355 Lexington Ave 15th Floor
New York, NY 10017
Service Categories:
National Support Services, Disab/Diag
Address: 355 Lexington Ave 15th Floor
New York, NY 10017
Toll Free Phone: 800-541-5454
Service Categories:
National Support Services, Disab/Diag
URL: https://myasthenia.org/
Eligibility: Patients, their families and caregivers, Myasthenia Gravis
Services Provided: MGFA serves through a network of chapters, support groups and programs. Each chapter shares the vision of a world without MG.

Adult Education
Co-Parenting Workshops
Individual Counseling
Information and Referral
Parent Support Groups
Peer Counseling
Support Groups
Supported Living Services for Adults with Disabilities
Source: Nationwide Suggest Providers Queue
Last Updated: 11/19/2019
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Myotonic
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: https://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.
Provider Profiles: AKA Myotonic Dystrophy Foundation
Source: MHP-Nationwide
Last Updated: 1/7/2020
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NADD: National Association for People with Dual Diagnosis
12 Hurley Avenue
Kingston, NY 12401
 Phone: 845-331-4336
Service Categories:
National Support Services, Disab/Diag
Address: 12 Hurley Avenue
Kingston, NY 12401
Phone: 845-331-4336
Service Categories:
National Support Services, Disab/Diag
Email: info@thenadd.org
URL: http://thenadd.org/
Eligibility: Co-existing intellectual/developmental disability (IDD) and mental health conditions or mental illness (MI)
Services Provided: An advocacy organization for individuals with dual diagnosis. Also offers training and support for professionals working with these individuals. Membership options for professionals, individuals, and organizations.

[https://thenadd.org/our-certificants/ List of Certificants and Accredited Organizations]
Source: MHP-Nationwide
Last Updated: 3/6/2020
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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)
(Show others in Organization)
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
Source: MHP-Nationwide
Last Updated: 4/23/2019
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National Alliance on Mental Illness (NAMI)
3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
 Phone: 703-524-7600
Service Categories:
Mental Health, Other Services
National Support Services, Disab/Diag
Address: 3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
Phone: 703-524-7600
Toll Free Phone: 800-950-6264
Service Categories:
Mental Health, Other Services
National Support Services, Disab/Diag
Email: info@nami.org
URL: https://www.nami.org
Eligibility: mental illness
Services Provided: NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. Today, we are an association of hundreds of local affiliates, state organizations and volunteers who work in your community to raise awareness and provide support and education that was not previously available to those in need.
Provider Profiles: Learn about mental health conditions, types of treatment, types of mental health professionals, warning signs, and connecting with support and discussion groups.
M - F 10 to 6 ET
Source: Medical Home Portal
Last Updated: 8/6/2018
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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/
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.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/17/2020
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National Association of State Directors of Developmental Disabilities Services
1201 15th St. NW, Ste 350
Washington, DC 20005
 Phone: 202-898-2578
Service Categories:
National Support Services, Disab/Diag
Address: 1201 15th St. NW, Ste 350
Washington, DC 20005
Phone: 202-898-2578
Service Categories:
National Support Services, Disab/Diag
Email: info@nasuad.org
URL: http://www.nasuad.org/initiatives/information-and-referralassistance/resources/federal-and-national-resources-and-contacts
Services Provided: Federal and National Resources and Contacts:
Federal Aging and Disability Resources
Federal Health Resources
Federal Mental Health Resources
Federal Benefit Assistance Resources
Other Federal Resources
National Organizations
Provider Profiles: National Association of States United for Aging and Disabilities
Source: Medical Home Portal
Last Updated: 12/18/2017
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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
(Show others in Organization)
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
Source: Medical Home 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 & Financial Aid
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 & Financial Aid
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.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019
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National Children's Cancer Society
500 North Broadway Ste 1850
Saint Louis, MO 63102
 Phone: 314-241-1600
Service Categories:
Medical Care Expense Assistance
National Support Services, Disab/Diag
Address: 500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600
Toll Free Phone: 800-532-6459
Service Categories:
Medical Care Expense Assistance
National Support Services, Disab/Diag
Email: lmillner@thenccs.org
URL: https://www.thenccs.org/
Eligibility: Parents and families of children in cancer treatment.Visit website for guidelines specific to each program.
Services Provided: The National Children's Cancer Society (NCCS) provides emotional, financial and educational support to children with cancer and their families and survivors. NCCS provides a Family Support Program, Transportation Assistance Fund and Emergency Assistance Fund to support families throughout the United States during their child's cancer treatment.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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National Down Syndrome Society
8 East 41st Street, 8th Floor
New York, NY 10017
 Phone: 212-460-9330
Service Categories:
National Support Services, Disab/Diag
Address: 8 East 41st Street, 8th Floor
New York, NY 10017
Phone: 212-460-9330
Toll Free Phone: 800-221-4602
Service Categories:
National Support Services, Disab/Diag
Email: info@ndss.org
URL: https://www.ndss.org/
Services Provided: A national advocacy and public policy center for persons with down syndrome. Nearly all of the 375 local affiliates have a parent support component. Affiliate services and programs may include: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down syndrome clinics, training for medical professionals and educators, Advocacy and Buddy Walks.
Source: MHP-Nationwide
Last Updated: 8/6/2019
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National Fabry Disease Foundation
Randleman, NC
 Phone: 800-651-9131
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
Address: Randleman, NC
Phone: 800-651-9131
Service Categories:
Camps for Children with Special Needs
National Support Services, Disab/Diag
URL: http://www.fabrydisease.org
Services Provided: Information about Fabry disease, counseling through the Fabry Family Assistance Program, physician locator, stories, links to publications, videos, books for children, and more.
Provider Profiles: The Charles Kleinschmidt Fabry Family Weekend Camp, is an annual camp for children ages 6-16 with Fabry Disease and their immediate families. The camp is held annually in September at Victory Junction camp in Randleman, North Carolina. Campers are chosen by an application process. Camp expenses, including airfare, are paid for by NFDF sponsors.
Source: Medical Home Portal
Last Updated: 7/30/2018
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National Family Association For Deaf / Blind
141 Middle Neck Road
Sands Point, NY 11050-1299
 Phone: 800-255-0411
Service Categories:
National Support Services, Disab/Diag
Address: 141 Middle Neck Road
Sands Point, NY 11050-1299
Phone: 800-255-0411
Service Categories:
National Support Services, Disab/Diag
URL: https://nfadb.org/
Eligibility: Contact for specific information.
Services Provided: NFADB advocates for all persons who are deaf-blind of any chronological age and cognitive ability; supports national policy to benefit people who are deaf-blind; encourages the founding and strengthening of family organizations in each state which are dedicated to assisting families of persons who are deaf-blind; shares information related to deaf-blindness and provides resources and referrals; collaborates with professionals who work with persons who are deaf-blind; is actively involved in national projects for deaf-blind to ensure consumer and family representation; and assists in the development of materials and training seminars which benefit family members.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/6/2019
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National Headache Foundation
Chicago, IL 60610-3131
 Phone: 312-274-2650
Service Categories:
National Support Services, Disab/Diag
Address: Chicago, IL 60610-3131
Phone: 312-274-2650
Service Categories:
National Support Services, Disab/Diag
Email: info@headaches.org
URL: https://headaches.org/
Services Provided: With the aim to cure headache, and to end its pain and suffering, the NHF has collected the most comprehensive information on headache and migraine on their website. Head Wise magazine provides in depth articles on advances in treatment and understanding of these complex diseases. NHF also funds headache research.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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National Institute of Mental Health Resource Center
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
 Phone: 866-615-6464
Service Categories:
Local Support Groups, Addiction
Mental Health, Other Services
National Support Services, Disab/Diag
Specialized Information Resources
Address: 6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663
Phone: 866-615-6464
TDD: 301-443-8431
Toll Free Phone: 866-615-6464
Service Categories:
Local Support Groups, Addiction
Mental Health, Other Services
National Support Services, Disab/Diag
Specialized Information Resources
Email: nimhinfo@nih.gov
URL: https://www.nimh.nih.gov/index.shtml
Languages Spoken: Spanish
Services Provided: Health information: mental health, getting help, statistics, clinical trials; outreach, research, opportunities for funding, labs at NIMH.
Source: MHP-Nationwide
Last Updated: 1/17/2020
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National Institute on Deafness and Other Communication Disorders
31 Center Dr., MSC 2320
Bethesda, MD 20892
 Phone: 800-241-1044
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Speech - Language Pathologists
Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Speech - Language Pathologists
URL: https://www.nidcd.nih.gov/
Eligibility: communication disorders
Services Provided: Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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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.
Source: MHP-Nationwide
Last Updated: 8/13/2019
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
 Phone: 203-744-0100
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
Transportation Expense Assistance
Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
Transportation Expense Assistance
URL: https://www.rarediseases.org/
Languages Spoken: Spanish
Eligibility: Persons with a rare disease, financial need.
Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Source: MHP-Nationwide
Last Updated: 9/12/2019
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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.
Source: Medical Home Portal
Last Updated: 8/6/2019
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National Resource Center for Supported Decision-Making, Kansas University
KS
 Phone: 202-448-1448
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Organization Name: Kansas University
(Show others in Organization)
Address: KS
Phone: 202-448-1448
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Email: JHJP@dcqualitytrust.org
URL: http://supporteddecisionmaking.org/
Eligibility: Persons with Developmental Disabilities and their families
Services Provided: Works to ensure that input is obtained from all relevant stakeholder groups including older adults, people with intellectual and developmental disabilities (I/DD), family members, advocates, professionals and providers.
Features a locator map to identify Developmental Disabilities statutes, presentations, and policy discussions. Resources library: Guardianship and Alternatives, Education and Transition Planning
Provider Profiles: A project of Quality Trust for Individuals with Disabilities, Burton Blatt Institute, Syracuse University, and Life Span Institute, University of Kansas (housing the Beach Center on Disability and the Kansas University Center on Developmental Disabilities)
Source: Medical Home Portal
Last Updated: 12/19/2018
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Oley Foundation
214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478
Service Categories:
Medical Care Expense Assistance
Medical Equipment/Supplies
National Support Services, Disab/Diag
Address: 214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478
Toll Free Phone: 800-776-OLEY
Service Categories:
Medical Care Expense Assistance
Medical Equipment/Supplies
National Support Services, Disab/Diag
URL: https://oley.org/
Services Provided: Provides, information and support for parenteral nutrition consumers (HPN or home IV-fed patients) to improve their health and quality of life. Also offers a national list of Donated Equipment and Supplies.
Source: Medical Home Portal
Last Updated: 8/20/2018
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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 Services
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 Services
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://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.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Parent to Parent USA
PO Box 9054
Austin, TX 78766
 Phone: 484-272-7368
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Address: PO Box 9054
Austin, TX 78766
Phone: 484-272-7368
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Email: memberinfo@p2pusa.org
URL: https://www.p2pusa.org/
Services Provided: Emotional and informational support for families of children who have special needs, Parent to Parent-USA (P2P-USA) is a national nonprofit organization committed to assuring access and quality in Parent to Parent support across the country. This site highlights state's organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices.
Source: MHP-Nationwide
Last Updated: 1/27/2020
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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: https://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.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Service Categories:
National Support Services, Disab/Diag
Address: 8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Toll Free Phone: 800-926-4797
Service Categories:
National Support Services, Disab/Diag
Email: support@pwsausa.org
URL: https://www.pwsausa.org/
Services Provided: An organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those impacted by Prader-Willi syndrome. Supports include: managing behavior, a Special Education consultant, Family Support Counselors, weight management, school issues, in-patient hospital and travel assistance programs, residential placement and legal issues.
Source: Medical Home Portal
Last Updated: 8/30/2018
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Propionic Acidemia Foundation
1963 McCraren Rd.
Highland Park, IL 60035
Service Categories:
National Support Services, Disab/Diag
Address: 1963 McCraren Rd.
Highland Park, IL 60035
Toll Free Phone: 877-720-2192
Service Categories:
National Support Services, Disab/Diag
URL: http://www.pafoundation.com/
Services Provided: Family support organization site offering information, family stories, frequently asked questions, newsletters, email discussion list, and other resources.
Source: Medical Home Portal
Last Updated: 12/18/2017
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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: https://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.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Scleroderma Foundation
300 Rosewood Drive Suite 105
Danvers, MA 01923
 Phone: 978-463-5843
Service Categories:
Local Support Groups, Disability/Diag
National Support Services, Disab/Diag
Specialized Information Resources
Address: 300 Rosewood Drive Suite 105
Danvers, MA 01923
Phone: 978-463-5843
Service Categories:
Local Support Groups, Disability/Diag
National Support Services, Disab/Diag
Specialized Information Resources
URL: https://www.scleroderma.org/site/SPageServer/#.XheI-kdKjcs
Eligibility: Those affected by scleroderma and their families.
Services Provided: Raise funds and awareness for support, education and research.
Provides educational and emotional support, stimulates and support research designed to identify the cause and cure for scleroderma, and improve methods of treatment; and enhances the public's awareness of this disease.
Chapters and Support Groups may be located in Resources.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/9/2020
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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.
Source: Medical Home Portal
Last Updated: 5/23/2018
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Sensory Processing Disorder Foundation
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
 Phone: 303-794-1182
Service Categories:
National Support Services, Disab/Diag
Address: 5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Service Categories:
National Support Services, Disab/Diag
URL: http://www.spdfoundation.net/
Services Provided: The SPD Foundation is the world leader in research, education, and awareness for Sensory Processing Disorder, a neurological condition, also known as sensory integration dysfunction.
Source: Medical Home Portal
Last Updated: 12/18/2017
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Sibling Support Project
6512 23rd Ave NW, Unit 213
Seattle, WA 98117
 Phone: 206-297-6368
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Address: 6512 23rd Ave NW, Unit 213
Seattle, WA 98117
Phone: 206-297-6368
Service Categories:
Family Support Services
National Support Services, Disab/Diag
Email: donmeyer@siblingsupport.org
URL: https://www.siblingsupport.org/
Services Provided: A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.
Provider Profiles: A Kindering Center program
Source: MHP-Nationwide
Last Updated: 8/6/2019
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Specialisterne USA
100 West 10th Street, Suite 615
Wilmington, DE 19801
Service Categories:
National Support Services, Disab/Diag
Vocational Education
Address: 100 West 10th Street, Suite 615
Wilmington, DE 19801
Service Categories:
National Support Services, Disab/Diag
Vocational Education
Email: contact.usa@specialisterne.com
URL: http://usa.specialisterne.com/
Eligibility: autism
Services Provided: Specialisterne is a social business based on the belief that autistic people have extraordinary talents that can be utilized by employers, with the right understanding of how to accommodate and manage people with different personalities and skills, to gain a competitive advantage. Services include: business services, assessment program, pre-employment.
Specialisterne works with a number of community agencies to search, select, assess, onboard and coach autistic people in meaningful jobs.
Provider Profiles: Utah community agency: Columbus Community Center, Salt Lake City

Offices in New York, and California
Source: Medical Home Portal
Last Updated: 12/18/2017
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Suicide Awareness Voices of Education
8120 Penn Avenue S Ste 470
Bloomington, MN 55431
 Phone: 952-946-7998
Service Categories:
National Support Services, Disab/Diag
Address: 8120 Penn Avenue S Ste 470
Bloomington, MN 55431
Phone: 952-946-7998
Toll Free Phone: 800-273-8255
Service Categories:
National Support Services, Disab/Diag
Email: dreidenberg@save.org
URL: https://save.org/
Eligibility: Anyone experiencing depression or thoughts of suicide, their families and loved ones.
Services Provided: A leading national nonprofit working to prevent suicide through public awareness, education and training, program and product development, and providing support and resources for those touched by suicide.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
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SuperSibs, Alex's Lemonade Stand Foundation
111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
 Phone: 610-649-3034
Service Categories:
National Support Services, Disab/Diag
Organization Name: Alex's Lemonade Stand Foundation
(Show others in Organization)
Address: 111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Toll Free Phone: 866-333-1213
Service Categories:
National Support Services, Disab/Diag
Email: info@alexslemonade.org
URL: https://www.alexslemonade.org/childhood-cancer/for-families/supersibs
Eligibility: Siblings and parents of children with cancer.
Services Provided: A support organization for siblings during their family’s battle against childhood cancer, assuring they are honored, supported and recognized. Programs include: Comfort and Care Services; Sib Spot; SuperSib Ambassador Program
Source: Nationwide Suggest Providers Queue
Last Updated: 1/9/2020
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Tourette Association of America
42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
 Phone: 718-224-2999
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Tourette Syndrome Programs
Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Tourette Syndrome Programs
Email: support@tourette.org
URL: https://tourette.org/
Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

[https://tourette.org/find-a-provider/ Find a Provider]: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

[https://tourette.org/about-tourette/overview/centers-of-excellence/center-excellence-locations/ Tourette Syndrome Centers of Excellence]: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.
Source: MHP-Nationwide
Last Updated: 2/4/2020
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Treat NMD Neuromuscular Network, Institute of Genetic Medicine, University of Newcastle upong Tyne
Service Categories:
National Support Services, Disab/Diag
Organization Name: Institute of Genetic Medicine, University of Newcastle upong Tyne
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Address:
Service Categories:
National Support Services, Disab/Diag
Email: info@treat-nmd.org
URL: https://treat-nmd.org/
Services Provided: A global neuromuscular diseases organization bringing together leading specialists, patient groups and industry representatives to ensure preparedness for the trials and therapies of the future while promoting best practice today.
Provider Profiles: University of Newcastle upon Tyne, United Kingdom
Institute of Genetic Medicine
University of Newcastle upon Tyne
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom

T: +44 (0)191 241 8839
Source: MHP-Nationwide
Last Updated: 1/6/2020
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Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
 Phone: 301-562-9890
Service Categories:
National Support Services, Disab/Diag
Address: 801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Toll Free Phone: 800-225-6872
Service Categories:
National Support Services, Disab/Diag
Email: info@tsalliance.org
URL: https://www.tsalliance.org/
Services Provided: Tuberous sclerosis complex (TSC) nationwide nonprofit organization. Website identifies TSC Clinics, a TSC Clinic Screening Tool, and a locator for local resources.
Source: Medical Home Portal
Last Updated: 8/6/2019
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Turner Syndrome Foundation
P.O. Box 726
Holmdel, NJ 07733
 Phone: 732-847-3385
Service Categories:
National Support Services, Disab/Diag
Address: P.O. Box 726
Holmdel, NJ 07733
Phone: 732-847-3385
Toll Free Phone: 800-594-4585
Service Categories:
National Support Services, Disab/Diag
Email: info@tsfusa.org
URL: https://turnersyndromefoundation.org/
Languages Spoken: Spanish
Services Provided: Supports research initiatives and facilitates education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.
Provider Profiles: 9 - 5 EST
Source: MHP-Nationwide
Last Updated: 12/11/2019
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US Autism & Asperger Association
12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532
Service Categories:
National Support Services, Disab/Diag
Address: 12180 South 300 East Unit 532
PO Box 532
Draper, UT 84020-0532
Toll Free Phone: 888-928-8476
Service Categories:
National Support Services, Disab/Diag
URL: https://www.usautism.org/
Eligibility: autism
Services Provided: A nonprofit with a network of world-renowned professionals with expertise in Autism, Asperger Syndrome, and other related disorders. US Autism & Asperger Association hosts a compendious world conference in the United States each year, establishes standards for Autism and Asperger Syndrome training, and aligns with local community resources to offer support for the entire Autism and Asperger communities.
Provider Profiles: A resource-rich website.
Source: MHP-Nationwide
Last Updated: 1/7/2020
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Undiagnosed Diseases Network, National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20982
Service Categories:
National Support Services, Disab/Diag
Organization Name: National Institutes of Health
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Address: 9000 Rockville Pike
Bethesda, MD 20982
Toll Free Phone: 844-746-4836
Service Categories:
National Support Services, Disab/Diag
Email: UDN@hms.harvard.edu
URL: https://commonfund.nih.gov/Diseases
Services Provided: The Common Fund’s Undiagnosed Diseases Network (UDN) is a research study to improve and accelerate diagnosis of rare and undiagnosed conditions. The UDN uses both basic and clinical research to improve the level of diagnosis and uncover the underlying disease mechanisms associated with these conditions; pioneering a new personalized medicine model.
Twelve clinical sites, a coordinating center, a sequencing core, a metabolomics core, two model organisms screening centers, and a central biorepository.
Source: Medical Home Portal
Last Updated: 11/11/2019
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United Ostomy Association
2489 Rice Street, Suite 120
Roseville, MN 55113
 Phone: 714-660-8624
Service Categories:
National Support Services, Disab/Diag
Address: 2489 Rice Street, Suite 120
Roseville, MN 55113
Phone: 714-660-8624
Toll Free Phone: 800-826-0826
Service Categories:
National Support Services, Disab/Diag
Email: susanburns@ostomy.org
URL: https://www.ostomy.org/
Services Provided: A national network for bowel and urinary diversion support groups in the United States. Its goal is to provide a nonprofit association that will serve to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers.

Peer Counseling
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
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WPATH Provider Directory, World Professional Association for Transgender Health (WPATH)
East Dundee, IL
Service Categories:
National Support Services, Disab/Diag
Organization Name: World Professional Association for Transgender Health (WPATH)
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Address: East Dundee, IL
Service Categories:
National Support Services, Disab/Diag
URL: https://www.wpath.org/provider/search
Services Provided: Searchable provider directory of medical providers for transgender health.
Provider Profiles: Formerly known as the Harry Benjamin International Gender Dysphoria Association (HBIGDA)
Source: MHP-Nationwide
Last Updated: 5/9/2019
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