Patient Resources, Foundations, and Support Organizations
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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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Select a letter to jump to the organization... or return to top of page A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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A |
ADA Business and Technical Assistance Program
ALS Association (ALSA)
ALS Therapy Development Foundation
Acid Maltase Deficiency Association (AMDA)
Acoustic Neuroma Association
Agenesis of the Corpus Callosum/
ACC Network
Aicardi Syndrome Foundation
Aicardi Syndrome Newsletter, Inc.
Alliance for Aging Research
Alternating Hemiplegia of Childhood Foundation (AHCF)
Alzheimer's Association
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 Foundation for AIDS Research
American Health Assistance Foundation
American Heart Association
American Liver Foundation
American Pain Foundation
American Parkinson Disease Association
American RSDHope Group
American Sleep Apnea Association
American Speech Language Hearing Association
(ASHA)
American Stroke Association:
A Division of American Heart Association
American Syringomyelia Alliance Project (ASAP)
Anencephaly Support Foundation
Angel Flight
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 Neuro-Metabolic Disorders
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
Ataxia Telangiectasia (A-T) Project
Attention Deficit Disorder Association (ADDA)
Attention Deficit Information Network
Autism National Committee (AUTCOM)
Autism Network International (ANI)
Autism Research Institute (ARI)
Autism Society of America Foundation
Autism Society of America
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
Boston Cure Project for MS
Brachial Plexus Palsy Foundation
Brain Aneurysm Foundation
Brain Injury Association
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 |
C-Mac Informational Services/Caregiver News
[For Alzheimer's Type Dementia Caregivers]
CHADD - Children and Adults with
Attention-Deficit/Hyperactivity Disorder
CJD Aware!
Canavan Disease Research
Canavan Foundation
Canavan Research Foundation
Cancer Care, Inc.
Carter Centers for Research in Holoprosencephaly
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 Gaucher Research Fund
Children's Hemiplegia and Stroke Assocn. (CHASA)
Children's Neurobiological Solutions (CNS) Foundation
Christopher Reeve Paralysis Foundation/
Paralysis Resource Center
Citizens United for Research in Epilepsy (CURE)
Cody Unser First Step Foundation
Coffin-Lowry Syndrome Foundation
Coma Recovery Association
Compassionate Friends
Creutzfeldt-Jakob (CJD) Foundation Inc.
Cure Autism Now (CAN) Foundation
Cushing's Support and Research Foundation
Cyclic Vomiting Syndrome Association-USA/Canada
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D |
Dana Alliance for Brain Initiatives
Daniel Heumann Fund for Spinal
Cord Research
Disability Resources
Disabled Sports USA
Dysautonomia Foundation
Dystonia Medical Research Foundation
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E |
Ear Foundation/Meniere's Network
Easter Seals
Elizabeth Glaser Pediatric AIDS Foundation
Epilepsy Foundation
Epilepsy Institute
Exceptional Parent Magazine
[Disability Resource]
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F |
FOCUS Families
FRAXA Research Foundation [for Fragile X Syndrome]
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
Financial Assistance Network
Foundation Fighting Blindness
Friedreich's Ataxia Research Alliance (FARA)
Friend's Health Connection
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G |
Genetic Alliance
Geoffrey Lance Foundation for SCI Research and Support
Guardians of Hydrocephalus Research Foundation
Guillain-Barre Syndrome Foundation International
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H |
HEATH Resource Center
National Clearinghouse on Postsecondary Education for Individuals with Disabilities/
American Council on Education
Hazel K. Goddess Fund for Stroke Research in Women
Head Injury Hotline
Hereditary Disease 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)
Institute for the Study of Aging
International Dyslexia Association
International Essential Tremor Foundation
International Joseph Disease Foundation, Inc.
International Multiple Sclerosis Support Foundation
International Myotonic Dystrophy Organization
International Radiosurgery Support Association (IRSA)
International Research Foundation for RSD/CRPS
International Rett Syndrome Association (IRSA)
Intracranial Hypertension Research Foundation
Iron Disorders Institute
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J |
Jim Lambright Niemann-Pick Foundation
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
Kids'Cures
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L |
Late Onset Tay-Sachs Foundation
Learning Disabilities Association of America
Les Turner ALS Foundation
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
MUMS National Parent-to-Parent Network
[For Parents of Children With Disabilities]
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
Moebius Syndrome Foundation
Montel Williams MS Foundation
Mucolipidosis IV Foundation (ML4)
Multiple Sclerosis Association of America
Multiple Sclerosis Foundation
Muscular Dystrophy Association
Muscular Dystrophy Family Foundation
Musella Foundation for Brain Tumor Research
and Information
Myasthenia Gravis Foundation of America, Inc.
Myelin Project
Myoclonus Research Foundation
Myositis Association
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N |
NBIA Disorders Association
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 Autism Hotline
National Brain Tumor Foundation (NBTF)
National Center for Learning Disabilities
National Chronic Pain Outreach Association
(NCPOA)
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 MPS Society, Inc.
National Meningitis Association
National Multiple Sclerosis Society
National NeuroAIDS Tissue Consortium
National Neurofibromatosis Foundation
National Niemann-Pick Disease Foundation, Inc.
National Organization for Rare Disorders (NORD)
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
Neurofibromatosis, Inc. (NF Inc.)
Neuropathy Association
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Select a letter to jump to the organization... or return to top of page A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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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)
Parents Against Childhood Epilepsy (PACE)
Parkinson Alliance
Parkinson's Action Network (PAN)
Parkinson's Disease Foundation (PDF)
Parkinson's Institute
Parkinson's Resource Organization
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
Perspectives Network (TPN)
[For Traumatic Brain Injury]
Pituitary Network Association
Polio Connection of America
Post-Polio Health International
Prader-Willi Syndrome Association
Preuss Foundation, Inc.
[For Brain Tumor Research]
Primary Lateral Sclerosis Newsletter
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 Disease/
National Coalition for Stroke & Heart Disease Prevention
Research!America
Resources for Rehabilitation
Restless Legs Syndrome Foundation
Rett Syndrome Research Foundation (RSRF)
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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
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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Select a letter to jump to the organization... or return to top of page A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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T |
TMJ Association
The Arc of the United States
Think First Foundation
[National Injury Prevention Program]
Tourette Syndrome Association
Transverse Myelitis Association
Trauma Foundation
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) Research & Educational Foundation
United Cerebral Palsy (UCP)
United Leukodystrophy Foundation
United Mitochondrial Disease Foundation
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V |
VZV Research Foundation
[For Research on Varicella Zoster]
Vascular Birthmarks Foundation
Vestibular Disorders Association (VEDA)
Von Hippel Lindau Family Alliance
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Select a letter to jump to the organization... or return to top of page A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
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W |
Well Spouse Foundation
Williams Syndrome Association
Wilson's Disease Association, International
Work Related Musculoskeletal Disorders Organization
Worldwide Education & Awareness for Movement
Disorders (WE MOVE)
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