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Resources for Specific Disabilities

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Alphabetically by condition

Alzheimer’s

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

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

See also Developmental Disabilities

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

See also Aging

American Association of Retired Persons (AARP) – Aging and Elderly
Toll Free:  888/687-2277,
Monday through Friday from 7 a.m. until 12 midnight EST

www.aarp.org

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)
ADDA provides information, resources and networking to adults with AD/HD and to the professionals who work with them.  Focus on diagnosing, treatments, strategies and techniques for helping adults with AD/HD lead better lives.
Phone:  484/945-2101
www.add.org
Locate a Local Support Group: www.add.org/help/support.html

Children and Adults with
Attention Deficit/Hyperactivity Disorder (CHADD)

Improving the lives of people affected by AD/HD through collaborative leadership, advocacy, research, education and support.
Toll Free: 800/233-4050
www.chadd.org

Learning Disabilities Association of America (LDA)
Toll Free:  888/300-6710, 412/341-1515
www.ldaamerica.us
Local a Local Chapter: www.ldaamerica.us/state_chapters/index.asp

Learning Disability Resources from LD Online
www.ldonline.org/ldresources

National Center on Learning Disabilities (NCLD)
Toll Free: 888/575-7373, 212/545-7510
www.ncld.org

National Institute for Literacy
The National Institute for Literacy, a federal agency, provides leadership on literacy issues, including the improvement of reading instruction for children, youth, and adults. Toll Free: 800/228-8813
ald@nifl.gov
www.nifl.gov
America's Literacy Directory: Programs for Learning Disabilities
www.literacydirectory.org

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

Lou Gehrig’s Disease (ALS)

ALS Association (ALSA) – Amyotrophic Lateral Sclerosis
aka Lou Gehrig’s Disease

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

Mental Illness/Mental Health

See also Mental Health and Mental Illness

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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