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For disease-specific lists of organizations, see individual disorder pages.
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Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Select a letter to jump to the organization or return to top of page
Organizations
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.
Sort Organizations by Special-Purpose Indexes
For disease-specific lists of organizations, see individual disorder pages.
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A
- A-T Ease Foundation, Inc.
- Accelerated Cure Project for Multiple Sclerosis
- Acid Maltase Deficiency Association (AMDA)
- Acoustic Neuroma Association
- ADA National Network
- Aicardi Syndrome Foundation
- Alliance for Aging Research
- ALS Association
- ALS Therapy Development Institute
- Alternating Hemiplegia of Childhood Foundation (AHCF)
- Alzheimer's Association
- Alzheimer's Foundation of America
- Alzheimer’s Drug Discovery Foundation
- American Autoimmune Related Diseases Association
- American Behcet's Disease Association
- American Brain Tumor Association (ABTA)
- American Cancer Society
- American Chronic Pain Association (ACPA)
- American Diabetes Association
- American Dystonia Society
- American Fibromyalgia Syndrome Association, Inc. (AFSA)
- American Headache Society Committee for Headache Education (ACHE)
- American Health Assistance Foundation
- American Heart Association
- American Liver 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 & Chiari Alliance Project (ASAP)
- amfAR, The Foundation for AIDS Research
- Angelman Syndrome Foundation
- Angioma Alliance
- Antiepileptic Drug Pregnancy Registry
- Aphasia Hope Foundation
- Ara Parseghian Medical Research Foundation [For Niemann-Pick Type C Disease]
- Arc of the United States, The
- Arthritis Foundation
- Association for Frontotemporal Degeneration (AFTD)
- Association for Glycogen Storage Disease
- Association for Science in Autism Treatment
- Ataxia Telangiectasia (A-T) Children's Project
- Attention Deficit Disorder Association (ADDA)
- Autism National Committee (AUTCOM)
- Autism Network International (ANI)
- Autism Research Institute (ARI)
- Autism Science Foundation
- Autism Society of America
- Autism Society of America Foundation
- Autism Speaks, Inc.
- 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
- Birth Defect Research for Children, Inc.
- BlazeSports America
- Brain Aneurysm Foundation
- Brain Injury Association of America, Inc.
- Brain Injury Resource Center
- Brain Trauma Foundation
- 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, Inc.
- Canavan Research Foundation
- Cancer Care
- Carter Centers for Brain Research in Holoprosencephaly
- Cerebral Palsy International Research Foundation
- CHADD - Children and Adults with Attention-Deficit/Hyperactivity Disorder
- Charcot-Marie-Tooth Association (CMTA)
- Charlie Foundation to Help Cure Pediatric Epilepsy
- Chiari & Syringomyelia Foundation
- 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
- Christopher and Dana Reeve Foundation
- Citizens United for Research in Epilepsy (CURE)
- CJD Aware!
- Coalition for Safe Minds [Mercury Exposure Resource]
- Coalition to Cure Calpain 3 (C3)
- Cody Unser First Step Foundation
- Coffin-Lowry Syndrome Foundation
- Coma/Traumatic Brain Injury Recovery Association, Inc
- Compassionate Friends
- Creutzfeldt-Jakob Disease (CJD) Foundation Inc.
- Cure CMD
- CUREPSP (Foundation for PSP|CBD and Related Brain Diseases)
- Cushing's Support and Research Foundation
- Cyclic Vomiting Syndrome Association
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D
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E
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F
- Fabry Support & Information Group
- Facioscapulohumeral Muscular Dystrophy (FSH) Society
- Familial Dysautonomia Hope Foundation, Inc. (FD Hope)
- Families of Spinal Muscular Atrophy
- Family Caregiver Alliance/ National Center on Caregiving
- Fibromuscular Dysplasia Society of America (FMDSA)
- Fibromyalgia Network
- Fight SMA
- FOCUS Families
- Foundation Fighting Blindness
- Foundation for Peripheral Neuropathy
- FRAXA Research Foundation [for Fragile X Syndrome]
- Friedreich's Ataxia Research Alliance (FARA)
- Friend's Health Connection
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G
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H
- Hazel K. Goddess Fund for Stroke Research in Women
- Heart Rhythm Foundation
- HEATH Resource Center The George Washington University
- Hereditary Disease Foundation
- Hereditary Neuropathy Foundation, Inc
- HHV-6 Foundation
- Hide and Seek Foundation for Lysosomal Storage Disease Research
- Hope for Hypothalamic Hamartomas (Hope for HH)
- 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 (ILRU)
- International Dyslexia Association
- International Essential Tremor Foundation
- International Myotonic Dystrophy Organization
- International RadioSurgery Association
- International Research Foundation for RSD/CRPS
- International Rett Syndrome Foundation
- Intracranial Hypertension Research Foundation
- Intractable Childhood Epilepsy Alliance
- Iron Disorders Institute
- ISMRD-International Advocate For Glycoprotein Storage Diseases
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J
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K
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L
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M
- MAAP Services for Autism, Asperger Syndrome, and PDD
- Magic Foundation [Growth Disorders]
- Make-A-Wish Foundation of America
- March of Dimes
- Meningitis Foundation of America, Inc.
- Miami Project to Cure Paralysis/ Buoniconti Fund
- Michael J. Fox Foundation for Parkinson's Research
- Migraine Research Foundation
- MitoAction
- MLD Foundation
- Moebius Syndrome Foundation
- Montel Williams MS Foundation
- Mucolipidosis IV (ML4) Foundation
- 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 Fund
- Musella Foundation for Brain Tumor Research and Information
- Myasthenia Gravis Foundation of America, Inc.
- Myelin Project
- Myelin Repair Foundation
- Myositis Association
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N
- Narcolepsy Network, Inc.
- Nathan's Battle Foundation [For Batten Disease Research]
- National Aphasia Association
- National Association of Hospital Hospitality Houses
- National Association of People with AIDS
- National Ataxia Foundation (NAF)
- National Brain Tumor Society
- National Center for Learning Disabilities
- National Center for Parents with Disabilities and their Families/Through the Looking Glass
- National Council on Patient Information and Education
- National Dissemination Center for Children with Disabilities
- National Down Syndrome Society
- National Dysautonomia Research Foundation
- National Fabry Disease Foundation
- National Family Caregivers Association
- National Fibromyalgia Association
- National Fibromyalgia Partnership, Inc.
- National Fibromyalgia Research Association
- 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 Disorders of the Corpus Callosum
- National Organization for Rare Disorders (NORD)
- National Organization of Social Security Claimants' Representatives
- National Organization on Disability
- National Parkinson Foundation
- National Patient Travel Center
- National Rehabilitation Information Center (NARIC)
- National Respite Network and Resource Center
- National Reye's Syndrome Foundation
- National Shingles Foundation [For Research on Varicella Zoster]
- 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.
- Neuropathy Association
- Nevus Outreach, Inc
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O
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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 and Clinical Center, The
- Parkinson's Resource Organization
- Partnership for Prescription Assistance
- Pathways Awareness
- Patient Advocate Foundation
- Pedal-with-Pete Foundation [for Research on Cerebral Palsy]
- Pediatric Brain Tumor Foundation
- Pediatric Hydrocephalus Foundation
- Pediatric Neurotransmitter Disease Association
- Pituitary Network Association
- PMD Foundation (Pelizaeus-Merzbacher disease)
- Post-Polio Health International
- Prader-Willi Syndrome Association
- Preuss Foundation, Inc. [For Brain Tumor Research]
- Prize4Life
- Project ALS
- Pseudotumor Cerebri Support Network
- Purine Research Society
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R
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S
- Sarcoidosis Research Institute
- Share and Care Cockayne Syndrome Network, Inc.
- Shy-Drager/Multiple System Atrophy Support Group, Inc.
- Sjogren's Syndrome Foundation
- Sotos Syndrome Support Association
- Spasmodic Torticollis Dystonia/ST Dystonia
- Spastic Paraplegia Foundation
- Spina Bifida Association
- Spinal Cord Society
- Spinal Muscular Atrophy Foundation
- Sturge-Weber Foundation
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T
- ThinkFirst National Injury Prevention Foundation
- TMJ Association Ltd.
- TNA -- Facial Pain Association (formerly the Trigeminal Neuralgia Association)
- Tourette Syndrome Association
- Transverse Myelitis Association
- Tremor Action Network
- Tuberous Sclerosis Alliance
- Tuchman Foundation [For Parkinson's Disease Research]
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U
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V
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W
National Institute of Neurological Disorders and Stroke
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