Support Organizations

Listed By Disease

1p36 Deletion Syndrome

1p36 Deletion Support & Awareness


Autism Society

Martin Mueller IV Achalasia Awareness Foundation

Acid Maltase Deficiency (see Pompe’s Disease)

ADCY5-induced Dyskinesia

Adipose Tissue Disorders

Fat Disorders Resource Society (FDRS) 

Adrenal Insufficiency

Adrenal Insufficiency United

Adrenoleukodystrophy (ALD)

The Stop ALD Foundation

ADNP Syndrome (Helsmoortel – Van Der Aa Syndrome)

The ADNP Kids Research Foundation

Adult Polyglucosan Body Disease (APBD)

The APBD Research Foundation (APBDRF)

Adrenal Diseases

National Adrenal Diseases Foundation (NADF) 

Alagille Syndrome (ALGS)

The Alagille Syndrome Alliance (ALGSA)

Alopecia Areata

National Alopecia Areata Foundation (NAAF)

Alport Syndrome (see Kidney)



Amyloidosis Foundation (AF)

Amyloidosis Research Consortium, Inc.

Amyloidosis Support Groups (ASG)

Amyotrophic Lateral Sclerosis

ALS Association

Angelman Syndrome (AS)

Foundation for Angelman Syndrome Therapeutics (FAST)

Aniridia (see WAGR Syndrome)

Antitrypsin Deficiency

Alpha 1 Foundation

Aplastic Anemia

The Aplastic Anemia & MDS International Foundation, Inc., (AA & MDS)

Julia’s Wings Foundation (JWF)

Arterial Tortuosity Syndrome

A Twist of Fate-ATS (ATOF)


Arthritis Foundation


Asthma & Allergy Foundation of America


National Ataxia Foundation (NAF)


The A-T Children’s Project


Autism Speaks

Alzheimer Europe


Autoimmune Disease

OMSLife Foundation

Autoinflammatory Diseases

The Autoinflammatory Alliance

Bannayan-Riley-Ruvalcaba Syndrome (BRRS)

PTEN Hamartoma Tumor Syndrome Foundation

Barth Syndrome

Barth Syndrome Foundation

Batten Disease

Batten Disease Support and Research Association (BDSRA)

Charlotte + Gwenyth Gray Foundation

Mila’s Miracle Foundation

Behçet’s Disease

The American Behçet’s Disease Association (ABDA)


Curing Retinal Blindness Foundation

Foundation Fighting Blindness

Jack McGovern Coats’ Disease Foundation

Sofia Sees Hope

Bone Marrow Failure Disorders

American Society of Hematology

Aplastic Anemia and MDS International Foundation

Diamond Blackfan Anemia Foundation

Dyskeratosis Congenita Outreach

Fanconi Anemia Research Fund

Leukemia and Lymphoma Society

MPN Research Foundation

Bohring-Opitz Syndrome

Bohring-Opitz Syndrome Foundation, Inc.


Brain Trauma Foundation


International FOXG1 Foundation

Glut1 Deficiency Foundation

Hydrocephalus Association

MSUD Family Support

NBIA Disorders Association

National Brain Tumor Society


cureCADASIL Association


Accelerate Brain Cancer Cure (ABC2)

American Cancer Society

Be the Match

Cholangiocarcinoma Foundation

Cutaneous Lymphoma Foundation

Fibrolamellar Cancer Foundation (FCF)

Fight Colorectal Cancer

Friends of Cancer Research

Lung Cancer Alliance

MDS Foundation

National Breast Cancer Foundation, Inc.

National Cancer Institute

National Lung Cancer Partnership

National Ovarian Cancer Coalition

Neuroendocrine Tumor Research Foundation (NTRF)

Cardio-Facio-Cutaneous Syndrome

Cardio-Facio-Cutaneous International

Castleman Disease

Castleman Disease Collaborative Network (CDCN)

CDKL5 Disorders

International Foundation for CDKL5 Research (IFCR)

Centronuclear Myopathy

Joshua Frase Foundation (JFF)

Cerebral Palsy

CHAMP 1 Foundation

CFC Syndrome

RASopathies Network USA

Charcot-Marie-Tooth (CMT)

Charcot-Marie-Tooth Association (CMTA)

Hereditary Neuropathy Foundation

Talia Duff Foundation, Inc.

Chromosome 15q Duplication Syndrome

Dup15q Alliance

Chromosome 18

Chromosome 18 Registry & Research Society

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

GBS/CIDP Foundation International

Complex Regional Pain Syndrome (CRPS)

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Costello Syndrome

RASopathies Network USA

Cowden Syndrome (CS)

PTEN Hamartoma Tumor Syndrome Foundation

Cushing’s Disease

Cushing’s Support and Research Foundation, Inc. (CSRF)

Cystic Fibrosis

Cystic Fibrosis Foundation

Cystic Fibrosis Trust


Cystinosis Research Network (CRN)


American Diabetes Association

Juvenile Diabetes Research Foundation (JDRF)

Dercum’s Disease

Fat Disorders Resource Society (FDRS)

Desmoid Tumor

Desmoid Tumor Research Foundation (DTRF)


DHPS Foundation

Down Syndrome

National Down Syndrome Society

Dravet Syndrome (see Epilespsy)

Dyskeratosis Congenita

Team Telomere, Inc.

Eating Disorders

National Eating Disorders Association

Ectodermal Dysplasias

National Foundation for Ectodermal Dysplasias (NFED)

Ehlers-Danlos Syndromes

The Ehlers-Danlos Society

Eosinophilic Disorders

The American Partnership for Eosinophilic Disorders (APFED)


Epidermylosis Bullosa (EB) Debra International

Dravet Syndrome Foundation (DSF)


Erdheim-Chester disease (ECD)

ECD Global Alliance

Erythromelalgia (EM)

Erythromelalgia Association

Face | Cranium (Head) Disfigurement or Injury

National Craniofacial Association

Children’s Craniofacial Association

Familial Dysautonomia

Familial Dysautonomia Foundation

Fancomi Anemia

Fancomi Anemia Research Fund

Fibrodysplasia Ossificans Progressiva (FOP)

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

Fibromuscular Dysplasia

Fibromuscular Dysplasia Society of America (FMDSA)

Fibrous Dysplasia (FD)

Fibrous Dysplasia Foundation, Inc. (FDF)

Food Allergies

Food Allergy Research & Education (FARE)

International Association for Food Protein Enterocolitis (IAFFPE)

The FPIES Foundation


International FOXG1 Foundation

Friedreich’s Ataxia

Friedreich’s Ataxia Research Alliance (FARA)


Galactosemia Foundation

Gastrointestinal Disorders

Crohn’s & Colitis Foundation

International Association for Food Protein Enterocolitis (IAFFPE)

The FPIES Foundation

Glycogen Storage Disease

The Association for Glycogen Storage Disease (AGSD)

Gorham’s Disease

Lymphangiomatosis & Gorham’s Disease (LGD) Alliance

Guillain-Barré Syndrome

GBS/CIDP Foundation International


American Heart Association

Children’s Cardiomyopathy Foundation (CCF)

Lipoprotein A Foundation

Myocarditis Foundation

National Coalition for Women with Heart Disease

Hemophagocytic Lymphohistiocytosis (HLH)

Team Audrey


Hemophilia Federation of America

National Hemophilia Foundation

World Federation of Hemophilia

Hemorrhagic Telangiectasia (HHT) – Osler Weber Rendu Syndrome

Cure HHT Foundation International, Inc.

Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC)

HLRCC Family Alliance

I’m Too Young for This! Cancer Foundation

International Neuroendocrine Cancer Alliance

LiFraumeni Syndrome (LFS) Association

Life Raft Group

Livestrong Foundation

Leukemia & Lymphoma Society

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome (HPS) Network


HCU Network America

HCU Network Australia


HSAN1E Society


Hydrocephalus Association

Hyper IgM

Hyper IgM Foundation


Hyperinsulinemic hypoglycemia of infancy (PHHI)

Congenital Hyperinsulinism International (CHI)

Hypophosphatasia (HPP)

Avalon Foundation

Soft Bones, Inc.: The US Hypophosphatasia Foundation

Immune Thrombocytopenia (ITP)

Platelet Disorder Support Association (PDSA)

Immunodeficiency and Autoimmune Diseases

Advocacy & Awareness for Immune Disorders Association (AAIDA)

Immune Deficiency Foundation

Incontinentia Pigmenti (IP)

National Incontinentia Pigmenti Foundation

Inflammatory Myopathies

The Myositis Association (TMA)

Kabuki Syndrome

All Things Kabuki

KAT6A Syndrome

KAT6A Foundation

Kennedy’s Disease

Kennedy’s Disease Association


Parents of Infants and Children with Kernicterus (PICK)


Alport Syndrome

The Alport Syndrome Foundation (ASF)

American Kidney Fund

HLRCC Family Alliance

National Kidney Foundation

Nephcure Kidney International Foundation

PKD Foundation

KIF1A Disorder


Klippel-Trenaunay Syndrome

Klippel-Trenaunay Support Group

Krabbe Disease


Lactose Intolerance

Galactosemia Foundation

Lowe Syndrome

Lowe Syndrome Association, Inc. (LSA)


Calliope Joy Foundation

Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL)

A Cure for Ellie

LiFraumeni Syndrome

LiFraumeni Syndrome (LFS) Association


Fat Disorders Resource Society (FDRS)

Lipedema Foundation


American Liver Foundation


American Lung Association

COPA Syndrome Foundation

PCD Foundation


Lupus Foundation of America


Lymphangiomatosis & Gorham’s Disease (LGD) Alliance

Lysosomal Storage Disease

Cystinosis Research Network (CRN)

ML4 Mucolipidosis Type IV Foundation

The International Advocate for Glycoprotein Storage Diseases

Macrocephaly-Capillary Malformation (M-CM)

M-CM Network

Maple Syrup Urine Disease

MSUD Family Support

Marfan Syndrome

Marfan Foundation

McCune-Albright Syndrome (FD/MAS)

Fibrous Dysplasia Foundation, Inc. (FDF)


Melorheostosis Association

Mental Illness

Depression and Bipolar Support Alliance

National Alliance on Mental Illness (NAMI)

Mitochondrial Disease

International Mito Patients

Mitochondrial Disease Action Committee | Mito Action

United Mitochondrial Disease Foundation

Take On TK2

Moebius Syndrome

Moebius Syndrome Foundation

Mowat-Wilson Syndrome

Mowat-Wilson Foundation

Mucopolysaccharidoses (MPS) | Mucolipidoses  (ML)

National MPS Society

Multiple Endocrine Neoplasia

The American Multiple Endocrine Neoplasia Support

Multiple Sclerosis

Consortium of Multiple Sclerosis Centers

National Multiple Sclerosis Society

Multiple System Atrophy

Defeat MSA

Muscular Dystrophy

Cure CMD

Duchenne and Becker Muscular Dystrophy

World Duchenne Organization

Muscular Dystrophy Association

Parent Project Muscular Dystrophy

Myasthenia Gravis

Myasthenia Gravis Foundation of America, Inc. (MGFA)

Myelodysplastic Syndromes (MDS)

The Aplastic Anemia & MDS International Foundation, Inc., (AA & MDS)

Myeloproliferative Neoplasms (MPNs)

MPN Research Foundation

Myotonic Dystrophy

Myotonic Dystrophy Foundation (MDF)

Myotubular Myopathy

Joshua Frase Foundation (JFF)

N-Glycanase Deficiency

NGLY1. org

Necrotizing Enterocolitis (NEC)

Morgan Leary Vaughan Fund

Neurodegenerative Disorders

Charlotte + Gwenyth Gray Foundation


HSAN1E Society


NBIA Disorders Association


Children’s Tumor Foundation (CTF)


Hereditary Neuropathy Foundation

Nervous System

GBS/CIDP Foundation International


RASopathies Network USA

Neurofibromatosis Network

Neurofibromatosis Northeast

Niemann-Pick Disease (NPD)

National Niemann-Pick Disease Foundation, Inc.

Noonan Syndromes

RASopathies Network USA

Ocular Melanoma

A Cure In SightTM

Ocular Melanoma Foundation

TargetCancer Foundation

The Aplastic Anemia & MDS International Foundation, Inc., (AA & MDS)

The Rare Cancer Research Foundation

Okur-Chung Neurodevelopmental Syndrome

CSNK2A1 Foundation

Opsoclonus Myoclonus Syndrome

OMSLife Foundation

Organic Acidemia

Organic Acidemia Association

Osler Weber Rendu Syndrome (see Hemorrhagic Telangiectasia)

Osteogenesis imperfecta (OI)

Osteogenesis Imperfecta Foundation (OIF)


National Osteoporosis Foundation

Parkinson’s Disease

Parkinson’s Foundation


Pheo Para Alliance

Phenylketonuria (PKU)

National PKU Alliance

National PKU News (NPKUN)

Prader-Willi Syndrome

Prader-Willi Syndrome Association (USA) (PWSA)

Primary Ciliary Dyskinesia

PCD Foundation


Legg Calve Perthes Foundation

PHACE Syndrome

PHACE Syndrome Community

Phelan-McDermid Syndrome

Phelan-McDermid Syndrome Foundation

Phenylketonuria (PKU)

Children’s PKU Network (CPN)

National PKU Alliance


Pheo Para Alliance

Pompe’s Disease

The Acid Maltase Deficiency Association, Inc. (AMDA)


The American Porphyria Foundation (APF)

Proteus Syndrome

PTEN Hamartoma Tumor Syndrome Foundation


National Psoriasis Foundation

PTEN Syndromes

PTEN Hamartoma Tumor Syndrome Foundation

Pulmonary Fibrosis

Pulmonary Fibrosis Foundation (PFF)

Parkinson’s Disease

European Parkinson’s Disease Association (EPDA)

Parkinson’s Foundation

Parkinson’s Disease Foundation

Peroxisome Biogenesis Disorders – Zellweger Spectrum Disorder (PBD-ZSD)

Global Foundation for Peroxisomal Disorders (GFPD)

Pfeiffer Syndrome

Born A Hero

Prader-Willi Syndrome

Foundation for Prader-Willi Research

Primary Biliary Cholangitis

Canadian PBC Society

Primary Lateral Sclerosis (PLS)

Spastic Paraplegia Foundation (SPF)

Primary Sclerosing Cholangitis (PSC)

PSC Partners Seeking a Cure

PURA Syndrome

PURA Syndrome Foundation

Rare Diseases

Canadian Organization for Rare Disorders (CORD)

CHAMP 1 Research Foundation

Chloe’s Fight Rare Disease Foundation

Chromosome Disorder Outreach


Every Life Foundation

Genetic Alliance

Genetic Alliance – Australia

Global Genes

Indian Organization for Rare Diseases

National Organization for Rare Diseases (NORD)

Organization for Rare Diseases India

Rare and Undiagnosed Network (RUN)

Rare Disease Action Network

Rare Kids Network

Taiwan Foundation for Rare Disorders


RASopathies Network USA

Recurrent Respiratory Papillomatosis

Recurrent Respiratory Papillomatosis Foundation (RRPF)

Reflex Sympathetic Dystrophy Syndrome

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Rett Syndrome

International Rett Syndrome Foundation

Rett Syndrome Research Trust (RSRT)

Rothmund-Thomson Syndrome

Rothmund-Thomson Syndrome Foundation


RYR-1 Foundation

Sacral Agenesis | Caudal Regression Syndrome

International Sacral Agenesis/Caudal Regression Association

Sanfilippo Syndrome

Sanfilippo Children’s Foundation


Foundation for Sarcoidosis Research


Scleroderma Foundation (SF)

Scleroderma Research Foundation

SETBP1 Disorder

SETBP1 Society

Short Bowel Syndrome

SBS Cure Project

Shwachman-Diamond Syndrome

Shwachman-Diamond Syndrome Foundation (SDSF)

Sickle Cell Disease

American Sickle Cell Anemia Association (ASCAA)

Association de Lutte Contre la Drépanocytose

Foundation for Sickle Cell Disease Research

Global Sickle Cell Disease Network

Sick Cells

Sickle Cell Disease Association of America

Sickle Cell Disease Coalition

Sickle Cell Society

Sickle Cell Warriors


Sitosterolema Foundation



Foundation for Ichthyosis & Related Skin Types (FIRST)

International Pemphigus & Pemphigoid Foundation

National Incontinentia Pigmenti Foundation

SLC13A5 | Citrate Transporter Disorder

Tess Research Foundation

Smith-Magenis Syndrome (SMS)

PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)

Snyder-Robinson Syndrome (SRS)

Snyder-Robinson Foundation

Spasmodic Dysphonia

National Spasmodic Dysphonia Association (NSDA)

Spastic Parapalegia

Spastic Paraplegia Foundation (SPF)

Spina Bifida

Spina Bifida Association (SBA)

Spinal Muscular Atrophy (SMA)

Cure SMA

The Gwendolyn Strong Foundation (theGSF)

Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)

SSADH Association

SYNGAP mutations

Bridge the Gap – SYNGAP Education and Research Foundation

TANGO2 Mutations

TANGO2 Research Foundation


National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

Telomere Biology Disorders

Team Telomere, Inc.


Cooley’s Anemia Foundation

TK2 Deficiency

Take On TK2


MEBO Research

Urea Cycle Disorders

National Urea Cycle Disorders Foundation (NUCDF)

USP7 Deletion | Mutation

Foundation for USP-7 Related Diseases

Van Lohuizen Syndrome

Canadian CMTC Foundation

CMTC Alliance


WAGR Syndrome

International WAGR Syndrome Association

Waldenstrom’s Macroglobulinemia (WM)

International Waldenstrom’s Macroglobulinemia Foundation (IWMF)

Wilm’s Tumor (see WAGR Syndrome)

Zellweger Syndrome

Global Foundation for Peroxisomal Disorders (GFPD)