Current List of Member Organizations
For more information on becoming a NORD Member Organization click here.
Acid Maltase Deficiency Association (AMDA)
ALS Association-Greater Philadelphia Chapter
Alternating Hemiplegia of Childhood Foundation
American Autoimmune Related Diseases Association, Inc.
American Behcet's Disease Association
American Brain Tumor Association
American Partnership for Eosinophilic Disorders
American Self-Help Group Clearinghouse
American Syringomyelia Alliance Project, Inc.
Amyloidosis Support Groups, Inc
Aplastic Anemia & MDS International Foundation, Inc.
Association for Frontotemporal Degeneration (AFTD)
Association for Glycogen Storage Disease
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Association of Genetic Support of Australasia Inc
Basal Cell Carcinoma Nevus Syndrome Life Support Network
Batten Disease Support and Research Association
Benign Essential Blepharospasm Research Foundation, 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
Chromosome 18 Registry and Research Society
Chromosome Disorder Outreach, Inc.
Chronic Granulomatous Disease Association, Inc.
Cicatricial Alopecia Research Foundation
CMTC-OVM Cutis Marmorata Telangiectatica Congenita
Coalition for Pulmonary Fibrosis
Congenital Hyperinsulinism International
Consortium of Multiple Sclerosis Centers
Cornelia de Lange Syndrome Foundation Inc.
Council for Bile Acid Deficiency Diseases
CurePSP Foundation for PSP/CBD & Related Brain Diseases
Cushing Support and Research Foundation
Cystinosis Research Network, Inc.
Desmoid Tumor Reseach Foundation
Dystonia Medical Research Foundation
DEBRA of America (Dystrophic Epidermolysis Bullosa Research Association of America)
Ehlers-Danlos National Foundation
(The) Erythromelalgia Association
Families of Spinal Muscular Atrophy
Family Support Network of North Carolina
Fibromuscular Dysplasia Society of America
Foundation for Ichthyosis & Related Skin Types
Friedreich's Ataxia Research Alliance (FARA)
Freeman-Sheldon Research Group, Inc.
GBS/CIDP Foundation International
Guthy Jackson Charitable Foundation
Hemophilia Federation of America
Hereditary Disease Foundation, Inc.
Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International
Hereditary Neuropathy Foundation
Histiocytosis Association, Inc.
Hope for Hypothalamic Harmartomas
Huntington's Disease Society of America
Hypoparathyroidism Association, Inc
Incontinentia Pigmenti International Foundation
In Need of Diagnosis, Inc (INOD)
International Association for Food Protein Entercolitis
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)
Jack McGovern Coats Disease Foundation
(The) Klippel-Trenaunay Support Group
Les Turner ALS Foundation, Ltd.
Liam's Land Organization, Inc.
Lymphangiomatosis & Gorham's Disease Alliance, Inc
(The) Mastocytosis Society, Inc.
Mucolipidosis Type IV Foundation, Inc (ML4)
Myasthenia Gravis Foundation of America
National Adrenal Diseases Foundation
National Alopecia Areata Foundation
National Eosinophilia Myalgia Syndrome Network
National Foundation for Ectodermal Dysplasias
National Hemophilia Foundation
National MPS (Mucopolysaccharidoses/Mucolipdoses) Society
National Multiple Sclerosis Society
National Niemann-Pick Disease Foundation, Inc.
National Organization for Albinism and Hypopigmentation, NOAH
National Spasmodic Dysphonia Association
National Spasmodic Torticollis Association
National Tay-Sachs and Allied Diseases Association, Inc.
National Urea Cycle Disorders Foundation
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.
Phelan-McDermid Syndrome Foundation
Platelet Disorder Support Association
Prader-Willi Syndrome Association (USA)
PSC Partners Seeking A Cure (Primary Sclerosing Cholangitis)
Pulmonary Hypertension Association
Recurrent Respiratory Papillomatosis Foundation
Reflex Sympathetic Dystrophy Syndrome Association of America
Sarcoid Networking Association
Scleroderma Research Foundation
(The) Short Bowel Syndrome Foundation, Inc
Shwachman-Diamond Syndrome Foundation
Sotos Syndrome Support Association
Stevens Johnson Syndrome Foundation and Support Group
Syncope Trust & Reflex Anoxic Seizures-STARS
Taiwan Foundation For Rare Disorders
TNA - The Facial Pain Association
Tourette Syndrome Association, Inc.
Turner Syndrome Society of the United States
United Leukodystrophy Foundation
United Mitochondrial Disease Foundation
US Hereditary Angioedema Association
Vestibular Disorders Association, VEDA
(The) Williams Syndrome Association
Wisconsin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association, Inc.
