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This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.

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A  Accelerated Cure Project for Multiple Sclerosis/ Boston Cure Project for MS
Acid Maltase Deficiency Association (AMDA)
Acoustic Neuroma Association
ADA Business and Technical Assistance Program
Agenesis of the Corpus Callosum/ ACC Network
 
Aicardi Syndrome Foundation
Aicardi Syndrome Newsletter, Inc.
Alliance for Aging Research
ALS Association (ALSA)
ALS Therapy Development Institute
 
Alternating Hemiplegia of Childhood Foundation (AHCF)
Alzheimer's Association
Alzheimer's Drug Discovery Foundation (formerly the Institute for the Study of Aging)
Alzheimer's Foundation of America
American Autoimmune Related Diseases Association
 
American Behcet's Disease Association
American Brain Tumor Association (ABTA)
American Cancer Society
American Chronic Pain Association (ACPA)
American Council for Headache Education
 
American Diabetes Association
American Fibromyalgia Syndrome Association
American Health Assistance Foundation
American Heart Association
American Liver Foundation
 
American Pain Foundation
American Parkinson Disease Association
American RSDHope Organization
American Sleep Apnea Association
American Speech Language Hearing Association (ASHA)
 
American Stroke Association: A Division of American Heart Association
American Syringomyelia Alliance Project (ASAP)
amfAR, The Foundation for AIDS Research
Anencephaly Support Foundation
Angelman Syndrome Foundation
 
Angioma Alliance
Antiepileptic Drug Pregnancy Registry
Aphasia Hope Foundation
Ara Parseghian Medical Research Foundation [For Niemann-Pick Type C Disease]
Arthritis Foundation
 
Association for Frontotemporal Dementias (AFTD)
Association for Glycogen Storage Disease
Association for Science in Autism Treatment
Ataxia Telangiectasia (A-T) Children's Project
Ataxia Telangiectasia (A-T) Ease Foundation
 
Ataxia Telangiectasia (A-T) Medical Research Foundation
Attention Deficit Disorder Association (ADDA)
Autism National Committee (AUTCOM)
Autism Network International (ANI)
Autism Research Institute (ARI)
 
Autism Society of America
Autism Society of America Foundation
Autism Tissue Program
 
 
 
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B  Bachmann-Strauss Dystonia & Parkinson Foundation
Barth Syndrome Foundation, Inc.
Batten Disease Support and Research Association
Benign Essential Blepharospasm Research Foundation, Inc.
Birth Defect Research for Children
 
Brachial Plexus Palsy Foundation
Brain Aneurysm Foundation
Brain Injury Association
Brain Injury Resource Center
Brain Trauma Foundation
 
Brain Tumor Society
Brave Kids [For Children With Special Needs]
Breaking New Ground Resource Center [For Farmers With Disabilities]
BridgeMar Research Foundation
 
 
 
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C  Canavan Disease Research
Canavan Foundation
Canavan Research Foundation
Cancer Care
Carter Centers for Research in Holoprosencephaly
 
CHADD - Children and Adults with Attention-Deficit/Hyperactivity Disorder
Charcot-Marie-Tooth Association (CMTA)
Charlie Foundation to Help Cure Pediatric Epilepsy
Childhood Brain Tumor Foundation
Children's Brain Disease Foundation [A Batten Disease Resource]
 
Children's Brain Tumor Foundation
Children's Craniofacial Association
Children's Gaucher Research Fund
Children's Hemiplegia and Stroke Assocn. (CHASA)
Children's Neurobiological Solutions (CNS) Foundation
 
Children's Tumor Foundation
Chordoma Research Foundation
Christopher Reeve Foundation & Resource Center
Citizens United for Research in Epilepsy (CURE)
CJD Aware!
 
C-Mac Informational Services/Caregiver News [For Alzheimer's Type Dementia Caregivers]
Cody Unser First Step Foundation
Coffin-Lowry Syndrome Foundation
Coma Recovery Association
Compassionate Friends
 
Creutzfeldt-Jakob (CJD) Disease Foundation Inc.
Cushing's Support and Research Foundation
Cyclic Vomiting Syndrome Association-USA/Canada
 
 
 
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D  Dana Foundation
Dandy-Walker Alliance
Daniel Heumann Fund for Spinal Cord Research
Disability Resources
Disabled American Veterans
 
Disabled Sports USA
Dysautonomia Foundation
Dysautonomia Youth Network of America, Inc.
Dystonia Medical Research Foundation
 
 
 
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E  Easter Seals
Elizabeth Glaser Pediatric AIDS Foundation
Epilepsy Foundation
Epilepsy Institute
Epilepsy Therapy Development Project
 
Exceptional Parent Magazine [Disability Resource]
 
 
 
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F  Fabry Support & Information Group
Facioscapulohumeral Dystrophy (FSHD) Society
Familial Dysautonomia Hope Foundation, Inc. (FD Hope)
Families of Spinal Muscular Atrophy
Family Caregiver Alliance
 
Fibromyalgia Network
FightSMA/Andrew's Buddies
FOCUS Families
Foundation Fighting Blindness
FRAXA Research Foundation [for Fragile X Syndrome]
 
Friedreich's Ataxia Research Alliance (FARA)
Friend's Health Connection
 
 
 
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G  GBS/CIDP Foundation International
Genetic Alliance
Guardians of Hydrocephalus Research Foundation
 
 
 
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H  Hazel K. Goddess Fund for Stroke Research in Women
Heart Rhythm Foundation
HEATH Resource Center National Clearinghouse on Postsecondary Education for Individuals with Disabilities/ American Council on Education
Hereditary Disease Foundation
HHV-6 Foundation
 
Hide & Seek Foundation
Human Growth Foundation
Hunter's Hope Foundation [A Leukodystrophy Resource]
Huntington's Disease Society of America
Hydrocephalus Association
 
Hydrocephalus Support Group, Inc.
 
 
 
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I  Independent Living Research Utilization Center (ILRU)
International Dyslexia Association
International Essential Tremor Foundation
International Joseph Disease Foundation, Inc.
International Myotonic Dystrophy Organization
 
International Research Foundation for RSD/CRPS
International Rett Syndrome Association (IRSA)
International Society for Mannosidosis & Related Diseases, Inc.
Intracranial Hypertension Research Foundation
Iron Disorders Institute
 
IRSA (International RadiologySurgery Association)
 
 
 
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J  John Douglas French Alzheimer's Foundation
Joubert Syndrome Foundation
Juvenile Diabetes Research Foundation, International
 
 
 
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K  Katie's Kids for the Cure [For Brain Tumor Research]
Kennedy's Disease Association
 
 
 
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L  Learning Disabilities Association of America
Les Turner ALS Foundation
Lewy Body Dementia Association
Lissencephaly Network
Lowe Syndrome Association
 
Lupus Alliance of America
Lupus Foundation of America
Lyme Disease Foundation
Lymphoma Research Foundation
 
 
 
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M  MAAP Services for Autism, Asperger's, and PDD
Magic Foundation
Make-A-Wish Foundation of America
March of Dimes Birth Defects Foundation
Mayday Fund [For Pain Research]
 
Medicine Program
Meningitis Foundation of America, Inc.
Miami Project to Cure Paralysis/ Buoniconti Fund
Michael J. Fox Foundation for Parkinson's Research
Migraine Research Foundation
 
Moebius Syndrome Foundation
Montel Williams MS Foundation
Mucolipidosis IV Foundation (ML4)
Multiple Sclerosis Association of America
Multiple Sclerosis Foundation
 
MUMS National Parent-to-Parent Network [For Parents of Children With Disabilities]
Muscular Dystrophy Association
Muscular Dystrophy Family Foundation
Musella Foundation for Brain Tumor Research and Information
Myasthenia Gravis Foundation of America, Inc.
 
Myelin Project
Myositis Association
 
 
 
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N  Narcolepsy Network, Inc.
Nathan's Battle Foundation [For Batten Disease Research]
National Alliance for Autism Research (NAAR)
National Aphasia Association
National Association of Hospital Hospitality Houses
 
National Association of People with AIDS
National Ataxia Foundation (NAF)
National Brain Tumor Foundation (NBTF)
National Center for Learning Disabilities
National Council on Patient Information and Education
 
National Disability Sports Alliance
National Down Syndrome Society
National Dysautonomia Research Foundation
National Family Caregivers Association
National Fibromyalgia Association
 
National Fibromyalgia Partnership, Inc.
National Fibromyalgia Research Association
National Foundation for the Treatment of Pain
National Fragile X Foundation
National Gaucher Foundation
 
National Headache Foundation
National Health Council
National Hospice and Palliative Care Organization /Natl. Hospice Foundation
National Hydrocephalus Foundation
National Meningitis Association
 
National MPS Society, Inc.
National Multiple Sclerosis Society
National NeuroAIDS Tissue Consortium
National Niemann-Pick Disease Foundation, Inc.
National Organization for Rare Disorders (NORD)
 
National Organization of Disorders of the Corpus Callosum
National Organization of Social Security Claimants' Representatives
National Organization on Disability
National Parkinson Foundation
National Patient Air Transportation Helpline
 
National Resource Center for Parents With Disabilities/Through the Looking Glass
National Respite Network and Resource Center
National Reye's Syndrome Foundation
National Sleep Foundation
National Spasmodic Dysphonia Association
 
National Spasmodic Torticollis Association
National Spinal Cord Injury Association
National Stroke Association
National Tay-Sachs and Allied Diseases Association
National Vaccine Information Center
 
National Vulvodynia Association
NBIA Disorders Association
Neurofibromatosis, Inc. (NF Inc.)
Neuropathy Association
 
 
 
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O  Opsoclonus Myoclonus Support Network, Inc.
 
 
 
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P  Paralyzed Veterans of America (PVA)
Parent Project Muscular Dystrophy (PPMD)
Parkinson Alliance
Parkinson's Action Network (PAN)
Parkinson's Disease Foundation (PDF)
 
Parkinson's Institute
Parkinson's Resource Organization
Partnership for Prescription Assistance
Pathways Awareness Foundation [For Children With Movement Difficulties]
Patient Advocate Foundation
 
Pedal with Pete [For Research on Cerebral Palsy]
Pediatric Brain Tumor Foundation
Pediatric Neurotransmitter Disease Association
Pelizaeus-Merzbacher Disease Foundation
People Against Childhood Epilepsy (PACE)
 
Perspectives Network (TPN) [For Traumatic Brain Injury]
Pituitary Network Association
Post-Polio Health International
Prader-Willi Syndrome Association
Preuss Foundation, Inc. [For Brain Tumor Research]
 
Project ALS
Pseudotumor Cerebri Support Network
Purine Research Society
 
 
 
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R  Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Rehabilitation International
Research Center for Stroke and Heart DiseaseNational Coalition for Stroke & Heart Disease Prevention
Research!America
Resources for Rehabilitation
 
Restless Legs Syndrome Foundation
 
 
 
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S  Safe Minds [Mercury Exposure Resource]
Sarcoidosis Research Institute
Share and Care Cockayne Syndrome Network, Inc.
Shy-Drager/Multiple System Atrophy Support Group, Inc.
Sjogren's Syndrome Foundation
 
Society for Progressive Supranuclear Palsy
Sotos Syndrome Support Association
Spasmodic Torticollis Dystonia/ST Dystonia
Spastic Paraplegia Foundation
Spina Bifida Association of America
 
Spinal Cord Society
Spinal Muscular Atrophy Foundation
Stroke Clubs International
Sturge-Weber Foundation
Synapse: A PLS Newsletter
 
 
 
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T  The Arc of the United States
Think First Foundation [National Injury Prevention Program]
TMJ Association
Tourette Syndrome Association
Transverse Myelitis Association
 
Tremor Action Network
Trigeminal Neuralgia Association
Tuberous Sclerosis Alliance
Tuchman Foundation [For Parkinson's Disease Research]
 
 
 
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U  United Brachial Plexus Network
United Cerebral Palsy (UCP)
United Cerebral Palsy (UCP) Research & Educational Foundation
United Leukodystrophy Foundation
United Mitochondrial Disease Foundation
 
United Spinal Association
 
 
 
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V  Vascular Birthmarks Foundation
Vestibular Disorders Association (VEDA)
Von Hippel Lindau Family Alliance
VZV Research Foundation [For Research on Varicella Zoster]
 
 
 
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W  Well Spouse Association
Williams Syndrome Association
Wilson's Disease Association, International
Worldwide Education & Awareness for Movement Disorders (WE MOVE)