Disability Awareness Programs

Voluntary health organizations committed to empowering and enhancing the lives of individuals with disability/diagnosis-specific conditions and their families through support and public awareness. 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)

If you know of a Service that should be listed but isn't, please Suggest a New Provider. If you find errors in a listing, please let us know by using the "Suggest an Edit" form on the provider's detail page.

MT

Statewide

2121 Rosebud Drive, Ste. C
Billings, MT 59102
Phone: 406-248-4801
Address:
2121 Rosebud Drive, Ste. C
Billings, MT 59102
Phone: 406-248-4801
TDD: 406-652-6046
Fax: 406-652-1781
Wheelchair Access: Yes
Services Provided: Voc-rehabilitation for the blind/visually impaired. Medical-vocational diagnosis, counseling, blindness prevention, rehabilitation, low-vision screening, mobility and training
Source: Montana Children's Special Health Services
Last Updated: 12/26/2019
Address:
1022 Chestnut St
Helena, MT 59601
Phone: 406-449-2344
Toll Free Phone: 800-245-4743
Fax: 406-449-2418
Email: advocate@disabilityrightsmt.org
Wheelchair Access: Yes
Eligibility: All children and adults with a disability are eligible for services.
Services Provided:

Disability Rights Montana envisions a society where people with disabilities have equality of opportunity and are able to participate fully in community life by exercising choice and self-determination. The Mission of Disability Rights Montana is to protect and advocate for the human, legal, and civil rights of Montanans with disabilities while advancing dignity, equality, and self determination.

Source: Montana Children's Special Health Services
Last Updated: 8/14/2020

Billings, MT

2132 Broadwater Suite A
Billings, MT 59102
Phone: 406-655-9000
Address:
2132 Broadwater Suite A
Billings, MT 59102
Phone: 406-655-9000
Services Provided: Serving the state of Montana
Source: Montana Children's Special Health Services
Last Updated: 12/20/2014
3814 Parkhill Drive
Billings, MT 59102
Phone: 406-256-0469
Address:
3814 Parkhill Drive
Billings, MT 59102
Phone: 406-256-0469
Services Provided: Our goal is to provide financial and emotional support to children, adults and families of those with chromosomal variations, as they navigate the beautiful, rewarding world of special needs. They have access to resources such as genetic counselor, social worker, all kinds of therapists, naturopathic physician, teachers and parents of children with special needs of all ages and abilities. They organize the annual fundraising Buddy Walk, a resource library, monthly parent support groups, Christmas dinner, Barbecue etc. As Down syndrome is the most common chromosomal variation, they are mostly parents of children with Down syndrome and vocal advocates for them.
Source: Montana Children's Special Health Services
Last Updated: 12/26/2019

Kalispell, MT

Address:
1203 Highway 2 W, Ste. 35
Kalispell, MT 59901
Phone: 406-257-0048
Toll Free Phone: 800-995-0029
Wheelchair Access: Yes
Languages Spoken: English, Russian, and Sign Language interpreters available
Eligibility: Individuals of all ages with all types of disabilities are eligible for Summit services.
Services Provided: Summit Independent Living Center, Inc. is a private, non-residential non-profit organization that offers a wide range of services designed to give people with disabilities the tools and resources that are needed to improve independence, self-confidence, knowledge, skills, and access to community resources. Five core service areas include:
Information and Referrals
Advocacy
Peer Advocacy
Skills Training
Transition Services
Skills Training
Source: Montana Children's Special Health Services
Last Updated: 2/13/2018

Missoula, MT

1280 S. 3rd Street West, Suite 4
Missoula, MT 59801
Phone: 406-541-6442
Address:
1280 S. 3rd Street West, Suite 4
Missoula, MT 59801
Phone: 406-541-6442
Toll Free Phone: 800-241-6442
Services Provided: “To create a better future for those impacted by brain injury through awareness, support, advocacy, community engagement, and the prevention of brain injury.”
Source: Montana Children's Special Health Services
Last Updated: 12/20/2014

Nationwide

4513 Tyson Ave.
Philadelphia, PA 19135
Address:
4513 Tyson Ave.
Philadelphia, PA 19135
Email: contactus@adapt.org
Services Provided:

A national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Key issue is affordable, accessible, integrated housing. Access Across America is a proposal to HUD for a national program.

Offers a directory of Local ADAPT Groups.

Source: MHP-Nationwide
Last Updated: 8/31/2020
1101 King Street, Suite 380
Alexandria, VA 22314
Phone: 703-535-7850
Organization Name: American Network of Community Options and Resources (ANCOR)
(Show others in Organization)
Address:
1101 King Street, Suite 380
Alexandria, VA 22314
Phone: 703-535-7850
Services Provided:

The ANCOR Foundation is a 501(c)3 organization created to support the development of innovative programs and disseminate information that will improve the quality of life for people with disabilities.

Programs include:

  • Included. Supported. Empowered.: Three-year campaign to celebrate the successes of people with intellectual and developmental disabilities and the providers who support them through storytelling.
  • Case for Inclusion: A tool (published annually) evaluating all 50 states and DC on how well state programs are serving individuals with I/DD. In partnership with United Cerebral Palsy.
  • Leadership Academy: Immersive two-year program for mid-career professionals working as I/DD service providers.
Source: Nationwide Suggest Providers Queue
Last Updated: 7/31/2020
11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Address:
11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Fax: 703-435-4390
Email: info@aedweb.org
Eligibility: Open to the public.
Services Provided: Provides research, educational forums, publications, subject matter experts and current information on treatment and prevention of eating disorders.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/7/2020
Address:
3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Fax: 202-337-8314
Email: info@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
8403 Colesville Road, Suite 900
Silver Spring, MD 20910
Phone: 202-387-1968
Address:
8403 Colesville Road, Suite 900
Silver Spring, MD 20910
Phone: 202-387-1968
Fax: 202-387-2193
Services Provided:

AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/25/2020
250 Williams Street NW
PO Box 22478 | Oklahoma City | OK 73123
Atlanta, GA 30303
Phone: 800-227-2345
Address:
250 Williams Street NW
PO Box 22478 | Oklahoma City | OK 73123
Atlanta, GA 30303
Phone: 800-227-2345
Toll Free Phone: 800-227-2345
Services Provided: Services include:
-Funding and conducting research
-Sharing expert information
-Supporting patients, including information about finding treatment and financial and transportation support for treatment
-Providing educational information and resources, including prevention information
Source: Nationwide Suggest Providers Queue
Last Updated: 2/21/2020
6868 Distribution Drive, Suite 460
Beltsville, MD 20705
Phone: 301-962-3520
Address:
6868 Distribution Drive, Suite 460
Beltsville, MD 20705
Phone: 301-962-3520
Toll Free Phone: 855-858-2226
Fax: 301-962-3521
Services Provided: As a leader in the national fight against childhood cancer, we speak for the needs of families and survivors, and in doing so, we help shape policy, research, and programs, nationally and internationally, that affect the lives of cancer-stricken families today and tomorrow.

Co-Parenting Workshops
Family Support Centers/Outreach
Information and Referral
Library Services
Parent Support Groups
Support Groups
System Advocacy
Source: Nationwide Suggest Providers Queue
Last Updated: 8/7/2019
1703 North Beauregard Street, Suite 420
Alexandria, VA 22311
Phone: 202-467-5081
Organization Name: American Council of the Blind
(Show others in Organization)
Address:
1703 North Beauregard Street, Suite 420
Alexandria, VA 22311
Phone: 202-467-5081
Toll Free Phone: 800-424-8666
Fax: 703-465-5085
Email: info@acb.org
Wheelchair Access: Yes
Eligibility: Those who are blind or visually impaired, their families, friends, doctors, caregivers, and anyone who works with blind or visually impaired people
Services Provided:

Non-medical information on blindness, and referrals to various sources of help, state services for the blind, and state libraries for the blind.

Resources: Offers a variety of resources, including Job Connection, Blind/Low Vision resources, peer support, and more

Scholarships: Scholarships for freshman, undergraduate, and graduate students. To be eligible for a scholarship, applicants need to be legally blind, maintain a 3.0 GPA to be eligible for most scholarships, be a full-time student (as well as students who work 32 or more hours per week and attend college part time), and be involved in their school/local community.

Programs and Services: Audio Description Project, Advocacy and Governmental Affairs, Radio, and more.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/28/2020
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Address:
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Toll Free Phone: 800-342-2383
Services Provided: We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. We fund research to prevent, cure and manage diabetes. We deliver services to hundreds of communities. We provide objective and credible information. We give voice to those denied their rights because of diabetes.

Website offers education, legal rights, health insurance, tips for caregivers, etc.
Source: MHP-Nationwide
Last Updated: 1/6/2020
275 N York St, Suite 201
Elmhurst, IL 60126
Phone: 630-617-5079
Address:
275 N York St, Suite 201
Elmhurst, IL 60126
Phone: 630-617-5079
Fax: 630-563-9181
Email: info@american-hearing.org
Services Provided: Research funding and educational information about hearing disorders, including Tinnitus and Meniere's Disease.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/17/2020
11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 301-881-3052
Address:
11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 301-881-3052
Toll Free Phone: 800-638-8299
Fax: 301-881-3311
Email: aandors@kidneyfund.org
Eligibility: Kidney patients and health care professionals.
Services Provided: Provides health information, education, financial assistance, advocacy and resource referrals for patients and health care professionals. Programs for children include summer enrichment activities and the annual Calendar Kids Art Contest. Financial assistance includes:
Health Insurance Premium Program (HIPP)
Safety Net grants
Disaster relief grants
Grants for children
Prescription drug resources
Medical Expense Assistance
Provider Profiles: Internet Information Resource
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Address:
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Toll Free Phone: 800-586-4872
Services Provided: Improving lung health and preventing lung disease through Education, Advocacy and Research. With the generous support of the public, we are "Fighting for Air."
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Address:
PO Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Toll Free Phone: 800-942-2732
Email: asdc@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
Address:
950 Pennsylvania Ave NW
Washington, DC 20210
Phone: 800-514-0301
TDD: 800-514-0383
Toll Free Phone: 800-514-0301
Fax: 202-307-1198
Services Provided: Provides Information and Referral literature/materials

ADA Implementation Assistance
Accessibility Related Standards/Legislation Compliance
Assistive Technology Equipment
Group Advocacy
Information and Referral
Issue Advocacy
Labor and Employment Law
Legislative Advocacy
Library Services
Protection and Advocacy for Individuals with Disabilities
Source: Nationwide Suggest Providers Queue
Last Updated: 1/9/2020
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Address:
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
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
6965 El Camino Real, Suite 105-598
Carlsbad, CA 92009
Address:
6965 El Camino Real, Suite 105-598
Carlsbad, CA 92009
Email: info@creatineinfo.org
Services Provided:

The Association for Creatine Deficiencies’ mission is to provide patient, family, and public education, to advocate for early diagnoses, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Offers information for patients and families, including online support groups, for clinicians, and about research.

Source: MHP-Nationwide
Last Updated: 8/18/2020
4182 Adams Ave
San Diego, CA 92116
Phone: 833-281-7165
Address:
4182 Adams Ave
San Diego, CA 92116
Phone: 833-281-7165
Toll Free Phone: 833-281-7165
Email: info@autism.org
Services Provided:

The Autism Research Institute (ARI) is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also disseminates research findings to parents and others worldwide seeking help. The ARI data bank, the world's largest, contains over 40,000 detailed case histories of autistic children from over 60 countries.

Services:

  • Online educational events for parents and caretakers
  • Continuing medical education credit for physicians, teachers, dietitians, and occupational therapists
  • ATEC treatment assessment tool for individuals with Autism Spectrum Disorder
  • Resource Line
  • Research updates and newsletters
Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
1 East 33rd Street, 2nd Floor
New York, NY 10016
Phone: 888-772-9050
Address:
1 East 33rd Street, 2nd Floor
New York, NY 10016
Phone: 888-772-9050
Toll Free Phone: 888-288-4762
Email: familyservices@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
One Park Avenue, Suite 1
Portsmouth, RI 02871
Phone: 401-293-5551
Organization Name: National Autism Association
(Show others in Organization)
Address:
One Park Avenue, Suite 1
Portsmouth, RI 02871
Phone: 401-293-5551
Toll Free Phone: 877-622-2884
Fax: 401-293-5342
Email: naa@nationalautism.org
Eligibility: Open to all.
Services Provided:

Offers the Big Red Safety Box for families. Also offers downloadable digital safety toolkits:


Offers a variety of resources for different audiences. These include Where to find swimming lessons; accidental drowning accounts for approximately 90% of lethal wandering outcomes.

Wandering defined: Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. Wandering dangers include Drowning; Exposure; Dehydration; Hypothermia; Traffic Injuries; Falls; Physical Restraint; Encounters with strangers; Encounters with law enforcement.

Provider Profiles:

The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration is a working group of six national non-profit autism organizations whose mission is to prevent autism-related wandering incidents and deaths.

Source: Nationwide Suggest Providers Queue
Last Updated: 8/31/2020
PO Box 66122
Washington, DC 20035
Address:
PO Box 66122
Washington, DC 20035
Email: info@autisticadvocacy.org
Services Provided: A national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to advance civil rights, support self-advocacy in all its forms, and improve public perceptions of autism. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Policy advocacy toolkits, action alerts.
Source: MHP-Nationwide
Last Updated: 9/26/2019
Address:
UT
Email: childgenetics@gmail.com
Services Provided:

Aware of Angels is a nonprofit photography project that advocates for children who have genetic, rare or undiagnosed disorders with a photography and blog project. AOA brings awareness to and shares stories and images of children with genetic disorders and those needing a diagnosis.

Source: MHP-Nationwide
Last Updated: 6/22/2020
Address:
275 Seventh Avenue
New York, NY 10001
Phone: 800-813-4673
Toll Free Phone: 800-813-4673
Fax: 212-712-8495
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
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
Fax: 860-676-8337
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
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Address:
39252 Winchester Road, #107-135
Murrieta, CA 92563
Phone: 918-490-3055
Services Provided:

Connecting Families UCD Foundation provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Connecting Families UCD Foundation hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Source: MHP-Nationwide
Last Updated: 8/19/2020
1703 N. Beauregard Street
Alexandria, VA 22311
Address:
1703 N. Beauregard Street
Alexandria, VA 22311
Toll Free Phone: 800-733-2258
Services Provided: With the purposes of: establish the right of persons with low vision to make full use of their vision through all available aids, services and technology; provide a mechanism through which low vision people can express their individual needs, interests and preferences; educate the general public, professionals, and low vision people themselves as to the potentialities, capabilities, and needs of low vision people; establish outreach programs to insure that all individuals with low vision have access to necessary services; promote research to prevent blindness, improve maximum utilization of sight, and improve environmental conditions and access for low vision people; support the development of and expansion of pre-service and in-service training programs to improve the quality and quantity of medical and rehabilitative low vision services.

System Advocacy
Source: Nationwide Suggest Providers Queue
Last Updated: 8/12/2019
Address:
733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423
Email: info@ccfa.org
Eligibility: Crohn's and Colitis patients, their families and medical professionals.
Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/7/2020
8301 Professional Place East, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700 Crisis Line: 800-332-1000
Address:
8301 Professional Place East, Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Crisis Line: 800-332-1000
Toll Free Phone: 800-332-1000
Fax: 301-577-2684
Email: ContactUs@efa.org
Wheelchair Access: Full Wheelchair Access
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided: Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Spanish-language line: 866-748-8008
Provider Profiles: Spanish Speakers Phone number: 866-748-8008
Source: Nationwide Suggest Providers Queue
Last Updated: 1/24/2020
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
Fax: 562-920-5240
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
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Address:
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Fax: 202-966-8553
Services Provided:

Mission: Genetic Alliance engages individuals, families, and communities to transform health.

Active Programs:

  • Advocacy-Led Research: Research tools for individuals and communities
  • Expecting Health: Assistance for all stages of family planning, including preconception and advocacy
  • Stakeholder Engagement: Facilitates communication across multidisciplinary stakeholders.
Provider Profiles:

Genetic Alliance was incorporated on October 31, 1986 as the Alliance of Genetic Support Groups. AGSG changed its name to Genetic Alliance in 2000.

Source: MHP-Nationwide
Last Updated: 6/8/2020
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Organization Name: Down Syndrome Achievement Centers
(Show others in Organization)
Address:
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Email: info@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
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Address:
15 South Mallory Avenue
Batavia, IL 60510
Phone: 630-360-2087
Email: info@hcunetworkamerica.org
Services Provided:

Resources, information, research information, and support for HCU.

Source: MHP-Nationwide
Last Updated: 8/19/2020
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Address:
200 Vesey Street, 28th Floor
New York, NY 10281
Phone: 800-533-2873
Fax: 212-785-9595
Email: info@jdrf.org
Services Provided: JDRF's (formerly Juvenile Diabetes Research Foundation) primary objective is to fund research into Type 1 diabetes.
Also provides:
•Informational Guides
•Virtual community
•Local chapters
•Fundraising and social events
Source: Nationwide Suggest Providers Queue
Last Updated: 1/3/2020
KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
Organization Name: Gallaudet University
(Show others in Organization)
Address:
KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
TDD: 202-651-5052
Fax: 202-651-5054
Services Provided: Responds to inquiries about a diverse range of topics related to deaf and hard-of-hearing children from infancy to age 21.
Source: MHP-Nationwide
Last Updated: 1/7/2020
400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Address:
400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Services Provided: Dedicated exclusively to the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.
Source: MHP-Nationwide
Last Updated: 1/7/2020
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
Phone: 229-518-2680
Address:
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
Phone: 229-518-2680
Toll Free Phone: 888-432-7899
Fax: 229-518-3879
Email: info@mendedhearts.org
Eligibility: Patients and families of children with congenital heart disease.
Services Provided: Mended Little Hearts services include: peer support and education, education resources, hospital outreach, CHD awareness, community health education, online community, and advocacy. Locator for a chapter nearby.
Source: Nationwide Suggest Providers Queue
Last Updated: 9/10/2019
Address:
222 S Riverside Plaza, Suite 1500
Chicago, IL 60606
Phone: 800-572-1717
Email: ResourceCenter@mdausa.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
220 North Green Street
Chicago, IL 60607
Phone: 630-557-1330
Address:
220 North Green Street
Chicago, IL 60607
Phone: 630-557-1330
Email: anadhelp@anad.org
Services Provided: The National Association of Anorexia Nervosa and Associated Disorders, Inc. (ANAD) is a non-profit organization working in the areas of support, awareness, advocacy, referral, education, and prevention. ANAD assists people struggling with eating disorders and also provides resources for families, schools and the eating disorder community. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.

  • Internet Information Resources
  • Disease/Disability Information
  • Specialized Information and Referral
Source: Nationwide Suggest Providers Queue
Last Updated: 10/5/2020
8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
Address:
8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
TDD: 301-587-1789
Fax: 301-587-1791
Eligibility: deaf and hard of hearing
Services Provided: Safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work includes accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. Website features advocacy information and resources.
Provider Profiles: NAD Youth Leadership Camp (YLC) is a four-week intensive educational program for high school students. Camp Taloali, Stayton, Oregon.
Source: Medical Home Portal
Last Updated: 8/6/2019
55 Chapel Street Ste 200
Newton, MA 02458
Phone: 617-924-9997
Address:
55 Chapel Street Ste 200
Newton, MA 02458
Phone: 617-924-9997
Fax: 617-924-9998
Eligibility: Anyone interested in brain tumor research, treatment or funding opportunities.
Services Provided: Finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/6/2020
PO Box 26853
San Jose, CA 95159-6853
Address:
PO Box 26853
San Jose, CA 95159-6853
Email: info@ncsautism.org
Services Provided:

Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.

Offers:

  • Education to the public
  • Platform for policy discourse and services
  • Education for policy makers
  • Promote research
  • Promote awareness and acceptance
Source: MHP-Nationwide
Last Updated: 10/13/2020
820 1st Street NE, Suite 740
Washington, DC 20002
Phone: 202-408-9514
Address:
820 1st Street NE, Suite 740
Washington, DC 20002
Phone: 202-408-9514
TDD: 202-408-9521
Fax: 202-408-9520
Eligibility: People with disabilities
Services Provided: Guards against abuse, advocating for basic rights, and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems.Works on behalf of the federally mandated Protection and Advocacy P&A Systems and the Client Assistance Programs CAP for individuals with disabilities.

Assistive Technology Equipment
Information and Referral
Library Services
System Advocacy
Source: Nationwide Suggest Providers Queue
Last Updated: 1/7/2020
7 Penn Plaza, Suite 1204
New York, NY 10001
Phone: 212-328-3700
Address:
7 Penn Plaza, Suite 1204
New York, NY 10001
Phone: 212-328-3700
Toll Free Phone: 800-424-2634
Fax: 212-328-3777
Email: handi@hemophilia.org
Wheelchair Access: Not Applicable
Services Provided: Information about preventing the complications of these disorders through education, advocacy and research. Chapters throughout the US.

Services include:
-Information about bleeding disorders, blood types, and blood safety
-Online and in-person educational events and workshops
-Advocacy information
-[Camp Locator] helps families find a camp for a child with a bleeding disorder, siblings, or the family.
Source: Nationwide Suggest Providers Queue
Last Updated: 3/9/2020
Address:
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 800-622-9010
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
Organization Name: Substance Abuse and Mental Health Services Administration (SAMHSA)
(Show others in Organization)
Address:
1 Choke Cherry Road
Rockville, MD 20857
Phone: 800-662-4357
Eligibility: For users of mental health services and their families, the general public, policy makers, providers, and the media.
Services Provided: The Center for Mental Health Services, within SAMHSA, leads Federal efforts to improve prevention and mental health treatment services for all Americans.
Information Center staff members are skilled at listening and responding to questions from the public and professionals. The staff quickly directs callers to Federal, State, and local organizations dedicated to treating and preventing mental illness. The Information Center also has extensive online and print publications, and information on Federal grants, conferences, and other events.
Provider Profiles: Use the locator website to filter your search: adolescent, substance, payment/insurance accepted, emergency, etc.
Source: MHP-Nationwide
Last Updated: 1/17/2020
9040 Duluth Street
Golden Valley, MN 55427
Phone: 763-559-1797
Address:
9040 Duluth Street
Golden Valley, MN 55427
Phone: 763-559-1797
Fax: 866-539-4060
Email: mkstagni@gmail.com
Services Provided:

Volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. Support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

Source: MHP-Nationwide
Last Updated: 8/19/2020
Address:
8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Toll Free Phone: 800-537-2237
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
Organization Name: Amputee Coalition
(Show others in Organization)
Address:
900 East Hill Ave, Suite 390
Knoxville, TN 37915
Toll Free Phone: 888-267-5669
Eligibility: Ages 10-17 who have limb loss or limb differences.
Services Provided:

Resources and support for individuals with limb loss and their families. Advocacy information and resources for state and national advocacy.

Paddy Rossbach Youth Camp: A 6-day traditional summer camp experience for children with limb loss and limb difference to increase self-confidence and self-esteem through a traditional and supportive summer camp experience. The Amputee Coalition arranges travel plans for all camp attendees. Cost: none! thanks to sponsors and donors. Opportunities for camp counselors ages 18-19 and age 20 and above.

Provider Profiles:

2016 dates July 8 - 16.

Source: MHP-Nationwide
Last Updated: 9/22/2020
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Address:
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-573-9971
Fax: 310-725-0029
Email: info@pancan.org
Eligibility: Cancer patients, survivors, and their families
Services Provided: Provides research, patient support, community outreach, and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. The programs aims to create a sense of hope and community so no one has to face pancreatic cancer alone.

  • Specialized Information and Referral
  • Clinical Trials
  • Disease/Disability Information
Source: Nationwide Suggest Providers Queue
Last Updated: 10/15/2020
Address:
4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Toll Free Phone: 800-818-7388
Email: admin@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
Organization Name: The Childhood RND Educational Foundation, Inc
(Show others in Organization)
Address:
PO Box 7762
Wilmington, DE 19803
Services Provided: The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]
Source: MHP-Nationwide
Last Updated: 2/26/2020
1825 K Street NW, Suite 600
Washington, DC 20006
Phone: 202-776-0406
Address:
1825 K Street NW, Suite 600
Washington, DC 20006
Phone: 202-776-0406
Toll Free Phone: 800-872-5827
Fax: 202-776-0414
Services Provided: UCP and its 64 affiliates have a mission to advance the independence, productivity and full citizenship of people with a broad range of disabilities by providing services and support to more than 176,000 children and adults every day. UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams.
Source: Nationwide Suggest Providers Queue
Last Updated: 8/8/2019