Resources for Specific Disabilities

Alphabetically by condition

Alzheimer’s Disease

Alzheimer's Association (AA): 24/7 Nationwide Contact Center
Toll Free: 800/272-3900
Email: info@alz.org
Locate a Local Chapter: www.alz.org/FindChapter.asp#SearchStart
www.alz.org

Amputation

American Amputee Foundation (AAF): Empowering amputees, their families, and care providers to make informed decisions by providing them information, referral, peer counseling, self-help literature, and education.
Phone: 501/666-2523, Monday through Friday from 8 a.m. until 5 p.m.
Email: info@americanamputee.org
www.americanamputee.org
AAF National Resource Directory: www.americanamputee.org/library/resources.aspx
Amputee Coalition of America (ACA): Toll Free: 888/267-5669, 865-524-8772 (V), 865-525-4512 (TTY)
National Limb Loss Information Center Contact Form: www.amputee-coalition.org
www.amputee-coalition.org/forms/nllicask/index.html
National Amputation Foundation (NAF): Phone: 516/887-3600
Email: amps76@aol.com
www.nationalamputation.org

Amyotrophic Lateral Slerosis (Lou Gehrig’s Disease or ALS)

ALS Association (ALSA): Toll Free: 800/782-4747, 818/880-9007
Contact ALSA: www.alsa.org/contact.cfm?CFID=1035325&CFTOKEN=14690032&recipient=info

www.alsa.org
Locate a Local Chapter: www.alsa.org/community/chapters.cfm?CFID=1035325&CFTOKEN=14690032

Autism

Autism Society of America (ASA): Toll Free: 800/328-8476, 301/657-0881
www.autism-society.org
Locate a Local Chapter: www.autism-society.org/site/PageServer?pagename=ChapterMap

Autoimmune Disorders/Chronic (Chronic Fatigue, Lupus, etc.)

American Autoimmune Related Diseases Association, Inc. (AARDA): Toll Free: 800/598-4668

Email: aarda@aarda.org

www.aarda.org
Chronic Fatigue and Immune Dysfunction Syndrome Association of America (CFIDS): Phone: 704/365-2343
www.cfids.org
Crohn’s & Colitis Foundation of America (CCFA): Toll Free: 800/932-2423
Email: info@ccfa.org
ccfa.org
Locate a Local Chapter: ccfa.org/chapters/?LMI=6
Fibromyalgia Health Center through WebMD: www.webmd.com/fibromyalgia
Fibromyalgia Network (FN): Toll Free: 800/853-2929
www.fmnetnews.com
Lupus Foundation of America, Inc. (LFA): Toll Free: 800/558-0121 (English), 800/558-0231 (Spanish), 202/349-1155,
Monday through Friday from 8:30 a.m. until 5 p.m. EST
Email: info@lupus.org
www.lupus.org
Locate a Local Chapter: www.lupus.org/chapters/locator.asp
National Fibromyalgia Association (NFA): Phone: 714/921-0150
www.fmaware.org
Locate a support group: www.fmaware.org/site/PageServer?pagename=community_support
GroupDirectory
National Psoriasis Foundation (NPF): Toll Free: 800/723-9166, 503/244-7404
Monday through Friday from 8 a.m. until 5 p.m. PST
Email: getinfo@psoriasis.org
www.psoriasis.org
Locate a Local Affiliate: www.psoriasis.org/netcommunity/support_directory
Sickle Cell Disease Association of America, Inc. (SCDAA): Toll Free: 800/421-8453, 410/528-1555
Email: scdaa@sicklecelldisease.org
www.sicklecelldisease.org
Locate a Local Affiliate: www.sicklecelldisease.org/members

Blind/Visual Impairment

American Council of the Blind (ACB): Toll Free: 800/424-8666, 202/467-5081
Email: info@acb.org
www.acb.org
Locate a Local Affiliate: www.acb.org/affiliates
American Foundation for the Blind (AFB): Toll Free: 800/232-5463, 212/502-7600
Email: afbinfo@afb.net
www.afb.org
American Printing House for the Blind, Inc. (APH): Toll Free Customer Service: 800/223-1839 (U.S. and Canada), 502/895-2405
Email: info@aph.org
www.aph.org
Braille Institute of America Universal Media Services: Phone: 323/906-3104, 323/663-1111, x1508;
Monday through Friday from 8:30 a.m. until 5 p.m. PST
Email: ums@brailleinstitute.org
www.universalmediaservices.org
National Braille Press Toll Free: 800/548-7323 www.nbp.org
The National Federation of the Blind (NFB): Phone: 410/659-9314
www.nfb.org
Locate a Local Affiliate: www.nfb.org/nfb/State_and_Local_Organizations.asp?SnID=452143330
National Library Service for the Blind and Physically Handicapped (NLS) – The Library of Congress: Toll Free: 888/657-7323, 202/707-5100 (V), 202/707-0744 (TTY)
Email (General): nls@loc.gov, Email (Reference): nlsref@loc.gov,
Email (Braille): braille@loc.gov
www.loc.gov/nls
Ushers Syndrome Information from the National Institutes of Health (NIH): For Eye Information call 301/496-5248 or email 2020@nei.nih.gov
For Immediate or Hearing Information
Toll Free: 800/241-1044 (V) or 800/241-1055 (TTY);
Monday through Friday, 8:30 a.m. to 5 p.m., EST
www.ushersyndrome.nih.gov

Brain/Head Injury

Brain & Spinal Cord Injury Resource Center: BrainandSpinalCord.org was created as a knowledge-base for brain injury and spinal cord injury survivors to help answer questions.
Toll Free: 800/800-0640
Contact: www.brainandspinalcord.org/contact.html
www.brainandspinalcord.org
Brain Injury Association of America (BIAA): Toll Free Family Helpline: 800/444-6443, 703/761-0750
Email: FamilyHelpLine@biausa.org
www.biausa.org
Locate a Local Chapter: www.biausa.org/stateoffices.htm
State Affiliate Information: www.biausa.org/stateoffices.htm#contacts
Brain Injury Resource Center Phone: 206/621-8558 Email: brain@headinjury.com www.headinjury.com
Center for Neuro Skills TBI Resource Guide Toll Free: 800/992-4994 www.neuroskills.com
International Brain Injury Association (IBAA) Phone: 703/960-6500 www.internationalbrain.org
National Resource Center for Traumatic Brain Injury www.nrc.pmr.vcu.edu
Traumatic Brain Injury Resource Directory (TBIRD) Produced by the Rehabilitation Research Center for TBI and SCI Email: tbird@tbi-sci.org www.tbi-sci.org/tbird/main.html

Cancer/Oncology

American Cancer Society (ACS)

Toll Free: 800/227-2345 (V), 866/228-4327 (TTY)

www.cancer.org

American Institute for Cancer Research (AICR)

AICR also maintains a "Nutrition Hotline" available through their toll-free service.

Toll Free: 800/843-8114, 202/328-7744
Email: aicrweb@aicr.org
www.aicr.org

Association of Cancer Online Resources (ACOR)

www.acor.org

Cancer Hope Network (CHN)

Toll Free: 877/467-3638, 908/879-4039
Email: info@cancerhopenetwork.org
www.cancerhopenetwork.org

Cancer411.org

Email: info@cancer411.org
www.cancer411.org

CancerCare

Toll Free: 800/813-4673, 212/712-8400
Email: info@cancercare.org
www.cancercare.org

National Cancer Institute - Cancer Information Service

Toll Free: 800/422-6237

www.cancer.gov

Cerebral Palsy

United Cerebral Palsy (UCP): Toll Free: 800/872-5827, 202/776-0406 (V), 202/973-7197 (TTY)
www.ucp.org

Deaf/Hard of Hearing

American Speech Language Hearing Association (ASHA): Toll Free Professionals/Students: 800/498-2071 (V), 301/897-5700 (TTY)
Toll Free Public: 800/638-8255, 8:30 a.m. until 5 p.m. EST
Email: actioncenter@asha.org
www.asha.org
Hearing Loss Association of America (HLAA) Phone: 301/657-2248 (V), 301/657-2249 (TTY) Email: info@hearingloss.org www.shhh.org Locate a Local Chapter: www.shhh.org/chapters
National Association of the Deaf (NAD): Phone: 301/587-1788 (V), 301/587-1789 (TTY)
Email: NADinfo@nad.org
www.nad.org
Locate a Local Chapter: www.nad.org/community/state-association-affiliates
National Institute on Deafness and Other Communication Disorders (NICHD): Toll Free Information Line: 800/241-1044 (V), 800/241-1055 (TTY),
Monday through Friday from 8:30 a.m. until 5 p.m. EST

Email: nidcdinfo@nidcd.nih.gov
www.nidcd.nih.gov

Developmental Disabilities

The Arc of the United States (ARC) – Developmental Disabilities: Phone: 301/565-3842
Email: info@thearc.org
www.thearc.org
Locate a Local Chapter: www.thearc.org/NetCommunity/Page.aspx?&pid=207&srcid=183
National Dissemination Center for Children with Disabilities (NICHCY): Toll Free: 800/695-0285 (V/TTY)
Email: nichcy@aed.org
www.nichcy.org
Resources by State: www.nichcy.org/states.htm
National Down Syndrome Society (NDSS): Toll Free: 800/221-4602, 212/460-9330, 9 a.m. until 5 p.m. EST

Email: info@ndss.org
www.ndss.org
Locate a Local Affiliate: www.ndss.org/index.php?option=com_content&task=view&id
=1996&Itemid=274

Diabetes

American Diabetes Association (ADA): Toll Free: 800/342-2383,
Monday through Friday from 8:30 a.m. until 8 p.m. EST

www.diabetes.org
Locate a Local Chapter: www.diabetes.org/communityprograms-and-localevents/whatslocal-location.jsp
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): Phone: 301/496-3583
www2.niddk.nih.gov/

Eating Disorders

National Eating Disorders Association (NEDA): Toll Free Information and Referral Line: 800/931-2237
Help Line Hours: M (11a-3p), Tu (8:30a-5p), W (8:30a-4:30p), Th (8:30a-5p), F (8:30a-5p) PST

Email: info@NationalEatingDisorders.org
www.nationaleatingdisorders.org

Elderly

Epilepsy

Epilepsy Foundation (EF): Toll Free: 800/332-1000
Locate a Local Chapter: www.efa.org/aboutus/AffiliateLookup.cfm
www.epilepsyfoundation.org

Genetic Disorders

Genetic Alliance: Phone: 202/966-5557, 9am - 6pm EST
Email: info@geneticalliance.org
www.geneticalliance.org
Genetic and Rare Diseases Information Center (GARD): Sponsored by NIH's Office of Rare Diseases and the National Human Genome Research Institute
Toll Free: 888/205-2311 (V), 888/205-3223 (TTY)
Contact Information: www.genome.gov/17516628
www.genome.gov/10000409

HIV/AIDS and STD Information

CDC-INFO formerly CDC National AIDS Hotline: Toll Free: 800/232-4636 (V), 888/232-6348 (TTY)
24/7 information line that offers anonymous, confidential HIV/AIDS information to the American public in English and Spanish.
The National Center for HIV, STD, and TB Prevention
www.cdc.gov/nchstp/od/nchstp.html

Huntington Disease

Huntington’s Disease Society of America (HDSA)

Toll Free: 800/345-4372, 212/242-1968
Email: hdsainfo@hdsa.org
www.hdsa.org
Locate a Local Chapter: www.hdsa.org/site/PageServer?pagename=Locate_Chapter

Learning Disabilities

Attention Deficit Disorder Association (ADDA)

National Resource Center on AD/HD

A program of CHADD, the NRC is clearinghouse for science-based information about all aspects of attention-deficit/hyperactivity disorder.
www.help4adhd.org

Mental Illness/Mental Health

Mental Health America (formerly the National Mental Health Association): Toll Free Mental Health Resource Center:
800/969-6642 (V),
800/433-5959 (TTY)
The Resource Center is available Monday through Friday from 9:00 am until 5:00 p.m. EST
If you need immediate help call the National Hope line Network 800/784-2433 to reach a 24-hour crisis center in your area.; Phone: 703/684-7722
www.nmha.org
Locate a State Affiliate: www.nmha.org/go/searchMHA
National Alliance for Mentally Ill (NAMI): Toll Free Information Helpline: 800/950-6264, 703/524-7600 (V),
703/516-7227 (TTY)

Monday through Friday from 10 a.m. until 6 p.m. EST

Email: info@nami.org
www.nami.org
Locate a Local Chapter: www.nami.org/template.cfm?section=Your_Local_Nami

Multiple Sclerosis

Multiple Sclerosis Foundation (MSF)

Toll Free MS Helpline: 888/679-6287, 9 a.m. until 7 p.m. EST

Phone: 954/776-6805
Email: support@msfocus.org
www.msfacts.org
Locate a Local Support Group: www.msfacts.org/support-groups.aspx

National Multiple Sclerosis Society (NMSS)

Toll Free: 800/344-4867
www.nationalmssociety.org
Locate a Local Chapter: www.nationalmssociety.org/find-a-chapter/index.aspx

Muscular Dystrophy

Muscular Dystrophy Association (MDA): Toll Free: 800/344-4863, 520/529-2000
Email: mda@mdausa.org
www.mdausa.org
Locate a Local Chapter: www.mdausa.org/locate

Musculoskeletal Diseases

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Toll Free: 877/226-4267, 301/495-4484 (V), 301/565-2966 (TTY) Email: niamsinfo@mail.nih.gov www.niams.nih.gov
National Institutes of Health Osteoporosis and Related Bone Diseases: National Resource Center (NIH ORBED-NRC)
Toll Free: 800/624-2663, 202/223-0344 (V), 202/466-4315 (TTY)
Email: NIAMSBONEINFO@mail.nih.gov
www.osteo.org

Neurological Disorders

American TOS Association: Non-profit organization dedicated to Thoracic Outlet Syndrome (TOS) education, research and advocacy.
Toll Free: 888/300-1954, Monday through Friday 9 a.m. until 5 p.m. EST

Contact: www.atosa.org/contact-us
Find a TOS provider by state: www.atosa.org/find-a-tos-healthcare-provider

www.atosa.org
Locked-In Syndrome - Rehabilitation Institute of Chicago Treatment Program: Phone: 312/238-1000
lifecenter.ric.org/content/3645
www.ric.org
Locked-In Syndrome Information Page from the National Institute of Neurological Disorders and Stroke (NINDS): www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm
Thoracic Outlet Syndrome Information Page from the National Institute of Neurological Disorders and Stroke (NINDS): www.ninds.nih.gov/disorders/thoracic/thoracic.htm
United Brachial Plexus Network, Inc. (UBPN): UBPN is devoted to providing information, support and leadership for families and those concerned with brachial plexus injuries worldwide.
Toll Free: 866/877-7004
Email: info@ubpn.org
www.ubpn.org

Paralysis/Spinal Cord Injury (SCI)

American Paraplegia Society (APS): Phone: 718/803-3782
Email: aps@unitedspinal.org
www.apssci.org
Christopher and Dana Reeve Paralysis Resource Center (PRC): PRC is promoting the health and well being of people living with paralysis and their families through comprehensive information resources and referral services.
Toll Free: 800/539-7309
Information Specialists are available 9 a.m. until 8 p.m. EST (English/Spanish)

Email: prc@crpf.org
Free Comprehensive guide to paralysis-related topics in English and Spanish:
www.paralysis.org
Paralysis Resource Guide (PRG)
"Experimental Treatment for SCI: Watch Out!": From the Spinal Cord Injury Update Winter 2008: 17(1), a product of the Northwest Regional Spinal Cord Injury System.
sci.washington.edu/info/newsletters/articles/08_win_exp_tx.asp
International Federation for Spina Bifida and Hydrocephalus: Contact Information: www.ifglobal.org/contact.asp?lang=1&main=4
www.ifglobal.org
National Spinal Cord Injury Association (NSCIA): Toll Free Helpline: 800/962-9629, 301/214-4006 (VM)
Email: info@spinalcord.org
www.spinalcord.org
Locate a Local Chapter: www.spinalcord.org/chapters
Spina Bifida Association of America: Toll Free: 800-621-3141
Email: sbaa@sbaa.org
Spina Bifida Clinics by state: www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642345/k.C49F/Clinics.htm
www.spinabifidaassociation.org
Spinal Cord Injury Network International (SCINI): Toll Free: 800/548-2673, 707/577-8796
Monday through Thursday from 9 a.m. until 4 p.m. PST

Email: spinal@sonic.net
www.spinalcordinjury.org
Transverse Myelitis Association: Phone: 614/766-1806
Email: info@myelitis.org
Resources: www.myelitis.org/resources.htm
Support Groups: www.myelitis.org/support.htm
www.myelitis.org

Pain Management

American Chronic Pain Association (ACPA): Toll Free: 800/533-3231, 916/632-0922
Email: ACPA@pacbell.net
www.theacpa.org
Locate a Local Group: www.theacpa.org/about/groups.asp

Parkinson Disease

American Parkinson Disease Association (APDA): Toll Free: 800/223-2732, 800/908-2732 (California), 718/981-8001
Email: apda@apdaparkinson.org
www.apdaparkinson.org
Locate a Local Chapter: www.apdaparkinson.org/userND/ChapterLocation.asp
National Parkinson Foundation, Inc. (NPF): Toll Free: 800/327-4545, 305/243-6666
Email: contact@parkinson.org
www.parkinson.org
Locate a Local Chapter: www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=302&srcid=236

Rare Diseases and Disorders

Genetic and Rare Diseases Information Center (GARD): Toll Free: 888/205-2311 (V), 888/205-3223 (TTY), 301/519-3194 (International Access)
Monday through Friday from 12 p.m. until 6 p.m. EST

Email: gardinfo@nih.gov
Contact information: www.genome.gov/17516628
www.genome.gov/10000409
National Organization for Rare Disorders (NORD): Toll Free: 800/999-6673 (VM only), 203/744-0100 (V), 203/797-9590 (TTY)
Email: orphan@rarediseases.org
www.rarediseases.org

Respiratory Ailments

American Lung Association (ALA): Toll Free: 800/586-4872
American Lung Association Call Center Toll Free: 800/548-8252
www.lungusa.org
Find a Local Chapter: www.lungusa.org/site/apps/kb/zip/zip.asp?c=dvLUK9O0E&b=37083
Cystic Fibrosis Foundation (CFF): Toll Free: 800/344-4823, 301/951-4422
Email: info@cff.org
www.cff.org
Locate a Local Chapter: www.cff.org/chapters_and_care_centers

Stroke/Heart Disease

American Heart Association (AHA): Toll Free: 800/242-8721
www.americanheart.org
Locate a Local Chapter: www.americanheart.org/presenter.jhtml?identifier=3005688
American Stroke Association (ASA): Toll Free: 888/478-7653
www.strokeassociation.org
Locate a Local Chapter: local.strokeassociation.org/presenter.jhtml?identifier=3006177
Pediatric stroke: www.strokeassociation.org/presenter.jhtml?identifier=3030392
Internet Stroke Center: Phone: 314/362-3868
Email: admin@strokecenter.org
Stroke Center Directory: www.strokecenter.org/strokecenters
www.strokecenter.org
National Aphasia Association (NAA): Toll Free: 800/922-4622
Email: responsecenter@aphasia.org, naa@aphasia.org
www.aphasia.org
Locate an Aphasia Community Group by State: www.aphasia.org/aphasia_community/aphasia_community_groups.html
University of Michigan Aphasia Program: Phone: 734/764-8440

www.aphasiahelp.com
National Institute of Neurological Disorders and Stroke (NINDS): Toll Free: 800/352-9424, 301/496-5751 (V), 301/468-5981 (TTY)
www.ninds.nih.gov
National Stroke Association (NSA): Toll Free: 800/787-6537
Email: Info@stroke.org
www.stroke.org
Pediatric Stroke Network (PSN) www.pediatricstrokenetwork.com
StrokEngine through McGill and Quebec Rehabilitation Research Network: Focuses on stroke rehabilitation and interventions. Information is derived from quality articles, websites and systematic reviews. All have been reviewed using a systematic process.
www.medicine.mcgill.ca/strokengine/index-en.html

Substance Abuse

American Council on Alcoholism (ACA): Toll Free Nationwide Helpline: 800/527-5344
Email: info@aca-usa.org
www.aca-usa.org
Locate a Local Meeting Group: www.aca-usa.org/meetings.htm
National Institute on Alcohol Abuse and Alcoholism (NIAAA): Contact Form: www.niaaa.nih.gov/ContactUs.htm
www.niaaa.nih.gov/ih.gov

Tourette Syndrome

Tourette Syndrome Association, Inc. (TSA): Toll Free: 888/486-8738, 718/224-2999
Email: ts@tsa-usa.org
tsa-usa.org

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