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Current List of Member Organizations

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Acid Maltase Deficiency Association (AMDA)

Acromegaly Community, Inc.

AKU Society of North America

Alagille Syndrome Alliance

Alpha 1 Foundation

Alport Syndrome Foundation

ALS Association-Greater Philadelphia Chapter

Alternating Hemiplegia of Childhood Foundation

American Multiple Endocrine Neoplasia Support

American Autoimmune Related Diseases Association, Inc.

American Behcet's Disease Association

American Brain Tumor Association

American Partnership for Eosinophilic Disorders

American Porphyria Foundation

American Self-Help Group Clearinghouse

American Syringomyelia & Chiari Alliance Project, Inc.

Amyloidosis Support Groups, Inc

Answering T.T.P. Foundation

APBD Research Foundation

Aplastic Anemia & MDS International Foundation, Inc.

Association for Creatine Deficiencies

Association for Frontotemporal Degeneration (AFTD)

Association for Glycogen Storage Disease

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

A-T Children's Project

Autoinflammatory Alliance

Basal Cell Carcinoma Nevus Syndrome Life Support Network

Batten Disease Support and Research Association

Benign Essential Blepharospasm Research Foundation, Inc.

Breath of Hope Inc

CADASIL Association, Inc.

Canadian Organization for Rare Disorders (CORD)

Cardio-Facio-Cutaneous International

Caring for Carcinoid Foundation

Charcot-Marie-Tooth Association

Children with Spinal Muscular Atrophy Ukraine

Children's Cardiomyopathy Foundation

Children's Craniofacial Association

Children's PKU Network

Children's Tumor Foundation

Cholangiocarcinoma Foundation

Chromosome 18 Registry and Research Society

Chromosome Disorder Outreach, Inc.

Chronic Granulomatous Disease Association, Inc.

Cicatricial Alopecia Research Foundation

Cleft Palate Foundation


CLOVES Syndrome Community

Cluster Headache Support Group, Inc

CMTC-OVM Cutis Marmorata Telangiectatica Congenita


Coalition for Pulmonary Fibrosis

Congenital Hyperinsulinism International

Consortium of Multiple Sclerosis Centers

Contact A Family

Cornelia de Lange Syndrome Foundation Inc.

Council for Bile Acid Deficiency Diseases

CurePSP Foundation for PSP/CBD & Related Brain Diseases

Cure HHT

Cure SMA

Cushing Support and Research Foundation

Cutaneous Lymphoma Foundation

Cutis Laxa Internationale

Cystinosis Foundation

Cystinosis Research Network, Inc.

Desmoid Tumor Reseach Foundation

Dysautonomia Foundation, Inc.

Dystonia Medical Research Foundation

DEBRA of America (Dystrophic Epidermolysis Bullosa Research Association of America)

Dup15 Alliance

ECD Global Alliance

Ehlers-Danlos National Foundation

(The) Erythromelalgia Association


Family Caregiver Alliance

Family Support Network of North Carolina

Fibromuscular Dysplasia Society of America

Fibrous Dysplasia Foundation

Foundation Fighting Blindness

Foundation for Ichthyosis & Related Skin Types

Foundation for Prader-Willi Research

Friedreich's Ataxia Research Alliance (FARA)

Freeman-Sheldon Research Group, Inc.

GBS/CIDP Foundation International

Genetic Alliance

Genetic Alliance Australia

Genetic & Rare Disorders Organisation

Global Foundation for Peroxisomal Disorders

Gut Check Foundation

Guthy Jackson Charitable Foundation

Hemophilia Federation of America

Hereditary Disease Foundation, Inc.

Hereditary Leiomyomatosis and Renal Cell Cancer Family Alliance

Hereditary Neuropathy Foundation

Hermansky-Pudlak Syndrome Network, Inc

Histiocytosis Association, Inc.

Hope for Hypothalamic Harmartomas

Huntington's Disease Society of America

Hydrocephalus Association

Hypoparathyroidism Association, Inc

Immune Deficiency Foundation

Incontinentia Pigmenti International Foundation

Indian Organization for Rare Disorders (I-ORD)

In Need of Diagnosis, Inc (INOD)

International FPIES Association

International Fibrodysplasia Ossificans Progressiva (FOP) Association

International Foundation for CDKL5 Research

International Myeloma Foundation

International Pemphigus Pemphigoid Foundation (IPPF)

International Rett Syndrome Foundation

International WAGR Syndrome Association

Intractable Childhood Epilepsy Alliance (ICE Epilepsy Alliance)

Iron Disorder Institute

Jack McGovern Coats Disease Foundation

Jared's Juggernaut, Inc

(The) JMML Foundation

(The) Joshua Frase Foundation for Congential Myopathy Research

Julia's Wings Foundation, Inc.

Kennedy's Disease Association

(The) Klippel-Trenaunay Support Group

LAL Solace, Inc.

(The) LAM Foundation

Les Turner ALS Foundation, Ltd.

Liam's Land Organization, Inc.

Life Raft Group

Locks of Love

Lowe Syndrome Association

Lymphangiomatosis & Gorham's Disease Alliance, Inc

(The) Marfan Foundation

(The) Mastocytosis Society, Inc.

M-CM Network

MEBO Research, Inc.

Melorheostosis Association

Mercy Medical Angels

Mesothelioma Applied Research Foundation


MPN Research Foundation

Mucolipidosis Type IV Foundation, Inc (ML4)

Moebius Syndrome Foundation

(The) Morgan Leary Vaughan Fund

MSUD Family Support Group

Myasthenia Gravis Foundation of America

(The) Myocarditis Foundation

Myositis Association

Myotonic Dystrophy Foundation

Narcolepsy Network, Inc.

National Adrenal Diseases Foundation

National Alopecia Areata Foundation

National Ataxia Foundation

National Brain Tumor Society

National Eosinophilia Myalgia Syndrome Network

National Foundation for Ectodermal Dysplasias

National Fragile X Foundation

National Hemophilia Foundation

National Lymphedema Network

National MPS (Mucopolysaccharidoses/Mucolipdoses) Society

National Multiple Sclerosis Society

National Niemann-Pick Disease Foundation, Inc.

National Organization for Albinism and Hypopigmentation, NOAH

National PKU Alliance

National PKU News

National Spasmodic Dysphonia Association

National Spasmodic Torticollis Association

National Tay-Sachs and Allied Diseases Association, Inc.

National Urea Cycle Disorders Foundation

NBIA Disorders Association

(The) NephCure Foundation

Neurofibromatosis Network

NTM Info & Research, Inc.

Ocular Melanoma Foundation

Organic Acidemia Association

Osteogenesis Imperfecta Foundation

(The) Oxalosis and Hyperoxaluria Foundation

Paget Foundation for Paget's Disease of Bone and Related Disorders

Pancreatic Cancer Action Network

Parent Project Muscular Dystrophy

Parent to Parent of New Zealand, Inc.

Parkinson's Disease Foundation, Inc.

PCD/KS Foundation

Phelan-McDermid Syndrome Foundation

PKD Foundation

Platelet Disorder Support Association

PMP Research Foundation

Prader-Willi Syndrome Association (USA)

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

Proyecto Pide un Deseo Mexico

PSC Partners Seeking A Cure (Primary Sclerosing Cholangitis)

Pulmonary Fibrosis Foundation

Pulmonary Hypertension Association

RASopathies Network USA

Recurrent Respiratory Papillomatosis Foundation

Red Sanfilippo A.C.

Reflex Sympathetic Dystrophy Syndrome Association of America

Rothmund-Thomson Syndrome Foundation

Sarcoid Networking Association

Sarcoma Foundation of America

Scleroderma Foundation, Inc.

Scleroderma Research Foundation

(The) Short Bowel Syndrome Foundation, Inc

Shwachman-Diamond Syndrome Foundation

Soft Bones, Inc.

Sotos Syndrome Support Association

Spastic Paraplegia Foundation

SSADH Association

Stevens Johnson Syndrome Foundation and Support Group

Sturge-Weber Foundation

Syncope Trust & Reflex Anoxic Seizures-STARS

Taiwan Foundation For Rare Disorders

Tarlov Cyst Disease Foundation

TNA - The Facial Pain Association

Tourette Syndrome Association, Inc.

Tuberous Sclerosis Alliance

Turner Syndrome Society of the United States

United Leukodystrophy Foundation

United Mitochondrial Disease Foundation

US Hereditary Angioedema Association

Vasculitis Foundation

Vestibular Disorders Association, VEDA

VHL Alliance

(The) Williams Syndrome Association

Wilson's Disease Association

Wisconsin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association, Inc.

The XLH Network, Inc

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