National Support Services, Disab/Diag

Description: 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)

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

725 Clubhouse Drive
Aptos, CA 95003
Phone: 831-200-4227
Address: 725 Clubhouse Drive
Aptos, CA 95003
Phone: 831-200-4227
Email: info@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
Original Source:
Last Updated: 8/23/2018
Address: 3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Fax: 202-337-8314
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.
Original Source:
Last Updated: 7/17/2018
P.O. Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Address: P.O. Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
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.
Original Source:
Last Updated: 7/17/2018
75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245
Address: 75 Executive Drive, Suite 327
Aurora, IL 60504
Phone: 630-978-4245
Toll Free Phone: 800-432-6435
Fax: 630-978-7408
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.
Original Source:
Last Updated: 8/21/2018
8701 Georgia Ave., Suite #412
Silver Spring, MD 20910
Phone: 240-485-1001
Address: 8701 Georgia Ave., Suite #412
Silver Spring, MD 20910
Phone: 240-485-1001
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.
Original Source:
Last Updated: 12/18/2017
4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Organization Name: National Environmental Education Foundation (NEEF)
Address: 4301 Connecticut Avenue NW, Suite 160
Washington, DC 20008-2326
Eligibility: Pediatric asthma, diabetes or obesity
Services Provided: Currently focused on providing resources to healthcare providers, one sample study, "Integrating environmental management of asthma into pediatric health care: what worked and what still needs improvement."
Original Source:
Last Updated: 8/6/2018
PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Address: PO Box 103
Denver, PA 17517
Phone: 800-939-1019
Eligibility: Individuals with ADHD and their families
Services Provided: An international nonprofit organization founded to help adults with Attention Deficit/ Hyperactivity Disorder (ADHD) lead better lives. This volunteer-run organization provides information and resources exclusively for and about adult ADHD.
Original Source:
Last Updated: 9/12/2018
1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Address: 1 East 33rd Street, 4th Floor
New York, NY 10016
Phone: 888-772-9050
Toll Free Phone: 888-288-4762
Eligibility: People with autism, their families and caregivers.
Services Provided: Provides the latest autism science and information; funding research into the causes, prevention, treatments and a cure for autism; awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
Original Source:
Last Updated: 9/18/2018
302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
Address: 302 Jefferson Street, Ste. 110
PO Box 17646
Raleigh, NC 27605
Phone: 919-715-4092
TDD: 919-715-4092
Fax: 919-715-4093
Eligibility: Parents of children who are deaf or hard of hearing
Services Provided: Information on communication options, placement, and educational programs for parents of children who are deaf or hard-of-hearing.
Original Source:
Last Updated: 12/18/2017
Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Organization Name: The University of Kansas
Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Fax: 785-864-7605
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.
Original Source:
Last Updated: 7/31/2018
10586 West Pico Boulevard, #196
Los Angeles, CA 90064
Phone: 260-225-3736
Address: 10586 West Pico Boulevard, #196
Los Angeles, CA 90064
Phone: 260-225-3736
Email: info@kesem.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
Original Source:
Last Updated: 8/8/2018
Address: 275 Seventh Avenue
New York, NY 10001
Phone: 212-712-8400
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.
Original Source:
Last Updated: 3/7/2018
Organization Name: Cornelia de Lange Syndrome Foundation
Address: 302 West Main Street #100
Avon, CT 06001
Phone: 860-676-8166
Toll Free Phone: 800-753-2357
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
Original Source:
Last Updated: 8/14/2018
Address: 35 Halsey Street 4th Floor
Newark, NJ 07102
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.
Original Source:
Last Updated: 8/27/2018
Address: 201 Chicago Avenue, #200
Minneapolis, MN 55415
Eligibility: For patients or caregivers, advocacy groups, health care providers, and supporters.
Services Provided: CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. Includes: Transition of Care, Infantile Spasms Awareness, Respite Care, Sudden Unexpected Death in Epilepsy, Grants and Scholarships, Webinars
Provider Profiles: National, web-based locator for services
Original Source:
Last Updated: 8/2/2018
13140 Coit Rd, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Address: 13140 Coit Rd, Suite 517
Dallas, TX 75240
Phone: 214-570-9099
Toll Free Phone: 800-535-3646
Fax: 214-570-8811
Email: areeves@ccakids.com
Eligibility: People with facial differences and their families
Services Provided: Children's Craniofacial Association is a national 501(c)3 nonprofit organization, headquartered in Dallas, Texas, 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. CCA's mission is to empower and give hope to individuals and families affected by facial differences.
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.
Original Source:
Last Updated: 12/19/2017
120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Address: 120 Wall Street, 16th Floor
New York, NY 10005-3904
Phone: 212-344-6633
Toll Free Phone: 800-323-7938
Fax: 212-747-0004
Email: info@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.
Original Source:
Last Updated: 8/28/2018
733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423
Address: 733 Third Ave Ste 510
New York, NY 10017
Phone: 800-932-2423
Eligibility: Crohn's and Colitis patients, their families and medical professionals.
Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis. Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.
Original Source:
Last Updated: 9/11/2018
1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Address: 1400 Quail Street, Suite 110
Newport Beach, CA 92660
Phone: 949-872-2552
Email: info@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.
Original Source:
Last Updated: 8/16/2018
Address: 4550 Montgomery Avenue, Suite 1100 N
Bethesda, MD 20814
Phone: 301-951-4422
Toll Free Phone: 800-344-4823
Eligibility: Pediatric and Adult specialized care centers
Services Provided: A web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.
Provider Profiles: The high quality of specialized care located at teaching and community hospitals across the country, these care centers offer the best care, treatments, and support for those with CF.
Original Source:
Last Updated: 8/1/2018
730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632
Address: 730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632
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
Original Source:
Last Updated: 12/18/2017
922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330
Phone: 617-577-9050
Address: 922 NW Circle Blvd.
Suite 160 PMB 290
Corvalis, OR 97330
Phone: 617-577-9050
Eligibility: Families with FG Syndrome
Services Provided: Facebook page to connect to other families impacted by FG Syndrome.
Original Source:
Last Updated: 8/30/2018
Organization Name: Sanofi Genzyme
Address: Cambridge, MA
Phone: 617-768-9000
Toll Free Phone: 800-745-4447
Eligibility: For patients and healthcare professionals
Services Provided: Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company. Offering care management.
Original Source:
Last Updated: 5/23/2018
Concordia, MO
Phone: 660-463-1355
Address: Concordia, MO
Phone: 660-463-1355
Services Provided: Information about Fabry disease, support group, discussion page, information about research, links to resources, and more.
Original Source:
Last Updated: 12/18/2017
PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Address: PO Box 37188
Albuquerque, NM 87176
Phone: 505-872-4774
Toll Free Phone: 888-835-5669
Fax: 505-872-4780
Services Provided: Provide leadership to develop and sustain a nationwide network of family-run organizations. Aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. We provide families resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.
Provider Profiles: Family Voices does not provide financial aid and is not a direct service provider. Contact Family Voices in your state.
Original Source:
Last Updated: 1/11/2018
9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Address: 9605 Medical Center Dr Suite 280
Rockville, MD 20850
Phone: 240-403-1901
Fax: 240-403-1909
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.
Original Source:
Last Updated: 8/2/2018
Organization Name: Psychology Today.com
Address:
Services Provided: National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.
Provider Profiles: Internet information resource, services locator
Original Source:
Last Updated: 8/8/2018
Organization Name: The 5p- (five p minus) Society
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.
Original Source:
Last Updated: 8/29/2018
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Address: 4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Fax: 202-966-8553
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
Original Source:
Last Updated: 12/18/2017
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Organization Name: Down Syndrome Achievement Centers
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!
Original Source:
Last Updated: 7/17/2018
PO Box 737
Owingsville, KY
Address: PO Box 737
Owingsville, KY
Email: info@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
Original Source:
Last Updated: 8/21/2018
Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106
Phone: 860-837-6232
Address: Connecticut Children's Medical Center
282 Washington Street
Hartford, CT 06106
Phone: 860-837-6232
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 Statewide 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
Original Source:
Last Updated: 6/18/2018
4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
Address: 4340 East West Highway, Suite 905
Bethesda, MD 20814
Phone: 301-202-3811
TDD: 888-598-3789
Fax: 301-202-3813
Services Provided: Education, research, support and advocacy for hydrocephalus.
Original Source:
Last Updated: 3/8/2018
Address: 110 West Road
Towson, MD 21204
Phone: 800-296-4433
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.
Original Source:
Last Updated: 7/17/2018
40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Address: 40 York Road, 4th Floor
Baltimore, MD 21204
Phone: 410-296-0232
Fax: 410-321-5069
Email: info@interdys.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.
Original Source:
Last Updated: 8/6/2018
PO Box 17598
Baltimore, MD 21297-1598
Phone: 800-239-1265
Organization Name: National Foundation for Depressive Illness, Inc. (NFDI)
Address: PO Box 17598
Baltimore, MD 21297-1598
Phone: 800-239-1265
Fax: 443-782-0739
Email: info@ifred.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.
Original Source:
Last Updated: 8/6/2018
P.O. Box 4067
Parker, CO 80134
Address: P.O. Box 4067
Parker, CO 80134
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.
Original Source:
Last Updated: 7/25/2018
6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Address: 6 East 39th Street, Suite 1204
New York, NY 10016
Phone: 212-647-7544
Toll Free Phone: 800-273-8255
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.
Original Source:
Last Updated: 5/22/2018
2201 E. Sixth Street
Austin, TX 78702
Phone: 512-236-8820
Address: 2201 E. Sixth Street
Austin, TX 78702
Phone: 512-236-8820
Eligibility: Cancer patients
Services Provided: Empowers the cancer community to address the unmet needs of cancer survivors. To do so, we encourage collaboration, knowledge-sharing and partnership. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.
Original Source:
Last Updated: 4/3/2018
Organization Name: A.G. Bell
Address: 3714 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Email: info@agbell.org
Languages Spoken: Spanish
Services Provided: AAG Bell Financial Aid programs. Also information about language development, early intervention, and hearing technology to help you ensure your child has the opportunity to develop language on par with children who have no hearing loss.
Provider Profiles: A.G. Bell, Association for the Deaf and Heard of Hearing
Original Source:
Last Updated: 7/26/2018
15201 Shady Grove Road, Suite 200
Rockville, MD 20850
Phone: 204-246-7140
Address: 15201 Shady Grove Road, Suite 200
Rockville, MD 20850
Phone: 204-246-7140
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.
Original Source:
Last Updated: 8/6/2018
Address: 6645 West North Avenue
Oak Park, IL 60302
Phone: 708-383-0808
Toll Free Phone: 800-362-4423
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.
Original Source:
Last Updated: 8/1/2018
2000 N. Beauregard Street, 6th Floor
Alexandria, VA 22311
Phone: 703-684-7722
Address: 2000 N. Beauregard Street, 6th Floor
Alexandria, VA 22311
Phone: 703-684-7722
TDD: 800-433-5959
Toll Free Phone: 800-969-6642
Fax: 703-684-5968
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.
Original Source:
Last Updated: 8/6/2018
Organization Name: Rutgers' University Behavioral Health Care
Address: New Brunswick, NJ
Phone: 877-914-6662
Toll Free Phone: 877-914-6662
Languages Spoken: Spanish speaking
Eligibility: mothers of children with special needs
Services Provided: 24/7 peer-support helpline for mothers of children with special needs. Counselors and support groups, using a "reciprocal peer support" model: the idea that people with similar experiences can assist each other.
Provider Profiles: Live Chat available
Original Source:
Last Updated: 8/28/2018
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. A web-based locator to find local services and summer camps in many states.
Original Source:
Last Updated: 8/27/2018
1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Address: 1004 A O'Reilly Avenue
San Francisco, CA 94129
Phone: 415-800-7777
Toll Free Phone: 866-968-6642
Email: info@myotonic.org
Services Provided: Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.
Original Source:
Last Updated: 8/23/2018
Address: 132 Fair Street
Kingston, NY 12401
Phone: 845-331-4336
Services Provided: To promote understanding of and services for individuals who have developmental disabilities and mental health needs, for professioanals, care providers and families, providing educational services, training materials and conferences.
Original Source:
Last Updated: 12/18/2017
Organization Name: Center for Parent Information and Resources (CPIR)
Address: Newark, NJ 97102
Phone: 973-642-8100
Eligibility: Disability-related issues for birth to 22
Services Provided: Information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals (birth to 22).
Provider Profiles: Internet information resources
Original Source:
Last Updated: 8/20/2018
3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
Phone: 703-524-7600
Address: 3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
Phone: 703-524-7600
Toll Free Phone: 800-950-6264
Email: info@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
Original Source:
Last Updated: 8/6/2018
Address: 220 N Green Street
Chicago, IL 60607
Phone: 630-557-1330
Eligibility: Eating disorders
Services Provided: Provides online research, educational forums, support groups, professional resources and current information on treatment and prevention of eating disorders. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.
Original Source:
Last Updated: 8/1/2018
Address: 1201 15th St. NW, Ste 350
Washington, DC 20005
Phone: 202-898-2578
Fax: 202-898-2583
Email: info@nasuad.org
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
Original Source:
Last Updated: 12/18/2017
3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007
Organization Name: Georgetown University Center for Child & Human Development
Address: 3300 Whitehaven St., NW, Suite 3300
Washington, DC 20007
Eligibility: Developmental disabilities (DD)
Services Provided: The goal of the Community of Practice on Cultural and Linguistic Competence in Developmental Disabilities (CoP) is to increase the number, diversity, and capacity of formal and informal leaders to transform their state/territorial developmental disabilities (DD) systems by: (1) advancing and sustaining cultural and linguistic competence (CLC) systemically through changes in values, policy, structures, and practices; and (2) responding effectively to the growing cultural and linguistic diversity among people with DD and their families who reside in states, territories, and tribal nations.

Resources includes papers on developmental disabilities.
Provider Profiles: In April 2017, the NCCC, in collaboration with AIDD, selected the following states and jurisdiction for membership in the CoP: Arizona, California, Colorado, District of Columbia, Indiana, Michigan, New York, Utah, Vermont, Wisconsin
Original Source:
Last Updated: 8/1/2018
500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600
Address: 500 North Broadway Ste 1850
Saint Louis, MO 63102
Phone: 314-241-1600
Fax: 314-241-1996
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.
Original Source:
Last Updated: 8/30/2018
Address: Randleman, NC
Phone: 800-651-9131
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.
Original Source:
Last Updated: 7/30/2018
Chicago, IL 60610-3131
Phone: 312-274-2650
Address: Chicago, IL 60610-3131
Phone: 312-274-2650
Email: info@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.
Original Source:
Last Updated: 6/18/2018
6001 Executive Boulevard, Room 8184, MSC 9663
Bethesda, MD 20892-9663
Phone: 301-443-4513
Address: 6001 Executive Boulevard, Room 8184, MSC 9663
Bethesda, MD 20892-9663
Phone: 301-443-4513
TDD: 866-415-8051
Toll Free Phone: 866-615-6464
Fax: 301-443-4279
Services Provided: Health information: mental health, getting help, statistics, clinical trials; outreach, research, opportunities for funding, labs at NIMH.
Original Source:
Last Updated: 5/30/2018
Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
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.
Original Source:
Last Updated: 3/22/2018
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.
Original Source:
Last Updated: 7/17/2018
Address: Danbury, CT
Toll Free Phone: 800-634-7207
Services Provided: The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Co-pay Assistance Program.
Patient Assistance Program, RareCare: helps patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Original Source:
Last Updated: 2/13/2018
Organization Name: Kansas University
Address: KS
Phone: 202-448-1448
Email: JHJP@dcqualitytrust.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
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)
Original Source:
Last Updated: 6/22/2018
214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478
Address: 214 Hun Memorial, MC-28
Albany Medical Center
Albany, NY 12208-3478
Toll Free Phone: 800-776-OLEY
Fax: 518-262-5528
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.
Original Source:
Last Updated: 8/20/2018
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.
Original Source:
Last Updated: 8/2/2018
2030 M St. NW, Suite 350
Washington, DC 20036
Address: 2030 M St. NW, Suite 350
Washington, DC 20036
Email: memberinfo@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 statewide organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices. About Parent to Parent - USA. Parent to Parent programs provide emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained Support Parent.
Original Source:
Last Updated: 12/18/2017
Address: 155 Second Street
Cambridge, MA 02141
Services Provided: Patients Like Me is a free health information sharing website for patients. Participants have the opportunity to share both personal stories and health data about their conditions; a network of 500,000 patients.
Original Source:
Last Updated: 6/14/2018
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Address: 8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Toll Free Phone: 800-926-4797
Email: support@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.
Original Source:
Last Updated: 8/30/2018
1963 McCraren Rd.
Highland Park, IL 60035
Address: 1963 McCraren Rd.
Highland Park, IL 60035
Toll Free Phone: 877-720-2192
Services Provided: Family support organization site offering information, family stories, frequently asked questions, newsletters, email discussion list, and other resources.
Original Source:
Last Updated: 12/18/2017
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.
Original Source:
Last Updated: 8/23/2018
Address:
Email: info@selectivemutism.org
Eligibility: A child or adolescent with an anxiety disorder of selective mutism
Services Provided: SMG, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child or adolescent with the anxiety disorder known as Selective Mutism, characterized by a child or adolescent’s inability to speak in one or more social settings.
Original Source:
Last Updated: 5/23/2018
5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
Address: 5420 S. Quebec Street, Suite 135
Greenwood Village, CO 80111
Phone: 303-794-1182
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.
Original Source:
Last Updated: 12/18/2017
6512 23rd Ave NW, #213
Seattle, WA 98117
Phone: 206-297-6368
Address: 6512 23rd Ave NW, #213
Seattle, WA 98117
Phone: 206-297-6368
Fax: 509-752-6789
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
Original Source:
Last Updated: 12/18/2017
Organization Name: Sickle Cell Disease Association of America, Inc.
Address: 231 East Baltimore Street, Suite 800
Baltimore, MD 21202
Toll Free Phone: 800-232-4636
Email: cdcinfo@cdc.gov
Services Provided: The Sickle Cell Disease National Resource Directory is a listing of national agencies, specialty care centers, and community-based organizations that provide services and resources for people affected by sickle cell disease (SCD). The goal of this directory is to help people find SCD services and resources. This directory is sorted by national and state resources and listed in A-Z order. Within each state, the resources are listed by type: Providers/Sickle Cell Centers, Non-Profits/Associations/Foundations, and Support Groups. In many cases, organizations offer both clinical and non-clinical resources and services. When making contact, ask about other services that may be offered such as support groups and social services.
Provider Profiles: National organization, http://www.sicklecelldisease.org/
Internet resource
Original Source:
Last Updated: 8/1/2018
100 West 10th Street, Suite 615
Wilmington, DE 19801
Address: 100 West 10th Street, Suite 615
Wilmington, DE 19801
Email: contact.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
Original Source:
Last Updated: 12/18/2017
8120 Penn Avenue S Ste 470
Bloomington, MN 55431
Phone: 952-946-7998
Address: 8120 Penn Avenue S Ste 470
Bloomington, MN 55431
Phone: 952-946-7998
Toll Free Phone: 800-273-8255
Eligibility: Anyone experiencing depression or thoughts of suicide, their families and loved ones.
Services Provided: A leading national non-profit working to prevent suicide through public awareness, education and training, program and product development, and providing support and resources for those touched by suicide.
Original Source:
Last Updated: 8/28/2018
111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Organization Name: Alex's Lemonade Stand Foundation
Address: 111 Presidential Blvd., Suite 203
Bala Cynwyd, PA 19004
Phone: 610-649-3034
Toll Free Phone: 866-333-1213
Fax: 610-649-3038
Eligibility: Siblings and parents of childhood 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
Original Source:
Last Updated: 5/24/2018
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.
Original Source:
Last Updated: 7/17/2018
PO Box 69232
West Hollywood, CA 90069
Phone: 866-488-7386
Address: PO Box 69232
West Hollywood, CA 90069
Phone: 866-488-7386
Eligibility: Lesbian, Gay, Bisexual, Transgender, and Questioning (LGBTQ) Youth (13-24), or anyone in crisis
Services Provided: Provides 24/7 suicide crisis intervention assistance for youth, including LGBTQ youth, through phone, text, chat, and instant messaging, as well as educational services about suicide prevention.
Original Source:
Last Updated: 3/28/2018
Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Fax: 718-279-9596
Email: support@tourette.org
Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS.) 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.
Original Source:
Last Updated: 8/22/2018
Address:
Email: info@treat-nmd.eu
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
Original Source:
Last Updated: 8/14/2018
801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Address: 801 Roeder Road, Suite 750
Silver Spring, MD 20910-4487
Phone: 301-562-9890
Toll Free Phone: 800-225-6872
Email: info@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.
Original Source:
Last Updated: 8/23/2018
12180 South 300 East #532
PO Box 532
Draper, UT 84020-0532
Address: 12180 South 300 East #532
PO Box 532
Draper, UT 84020-0532
Toll Free Phone: 888-928-8476
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.
Original Source:
Last Updated: 12/18/2017