NORD was founded on the principles of collaboration and a united voice, and are proud to work closely with over 280 dedicated member organizations.
Together, we work on advocacy, research, patient assistance, education, access, empowerment, and much more.
Acid Maltase Deficiency Association (AMDA)
Adrenal Insufficiency United (AIU)
Advocacy & Awareness for Immune Disorders Association (AAIDA)
Alternating Hemiplegia of Childhood Foundation (AHCF)
American Behçet’s Disease Association
American Brain Tumor Association
American Multiple Endocrine Neoplasia Support
American Partnership for Eosinophilic Disorders (APFED)
Amniotic Fluid Embolism Foundation (AFE Foundation)
Amyloidosis Research Consortium, Inc.
Amyloidosis Support Groups, Inc.
Aplastic Anemia & MDS International Foundation, Inc.
Appendix Cancer/Pseudomyxoma Peritonei Research Foundation (ACPMP)
Association for Creatine Deficiencies
Association for Frontotemporal Degeneration (AFTD)
Association for Glycogen Storage Disease
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
Ataxia Telangiectasia Children’s Project, Inc (A-T)
Autoimmune Encephalitis Alliance
Autoimmune Hepatitis Association
Basal Cell Carcinoma Nevus Syndrome Life Support Network
Batten Disease Support and Research Association
Benign Essential Blepharospasm Research Foundation, Inc.
Bohring-Opitz Syndrome Foundation, Inc.
BORN A HERO, Pfeiffer’s Health and Social Issues Awareness
Bridge the Gap – SYNGAP Education and Research Foundation
Canadian Organization for Rare Disorders
Cardio-Facio-Cutaneous International (CFC)
Castleman Disease Collaborative Network
CCHS Family Network (Congenital Central Hypoventilation Syndrome)
Charcot-Marie-Tooth Association
Charlotte & Gwenyth Gray Foundation to Cure Batten Disease
Children’s Cardiomyopathy Foundation
Children’s Craniofacial Association
Chloe’s Fight Rare Disease Foundation
Chromosome 18 Registry & Research Society
Chromosome Disorder Outreach, Inc.
Cicatricial Alopecia Research Foundation (CARF)
Cluster Headache Support Group, Inc.
CMTC-OVM Cutis Marmorata Telangiectatica
Congenital Hyperinsulinism International
Consortium of Multiple Sclerosis Centers
Cornelia de Lange Syndrome Foundation, Inc.
Cure CMD (Congenital Muscular Dystrophy)
Curing Retinal Blindness Foundation
Cushing’s Support and Research Foundation, Inc.
Cystinosis Research Network, Inc.
Desmoid Tumor Research Foundation
Dravet Syndrome Foundation, Inc.
EURORDIS- Rare Diseases Europe
Familial Dysautonomia Foundation
Fanconi Anemia Research Fund, Inc.
Fat Disorders Research Society, Inc.
Fibrolamellar Cancer Foundation (FCP)
Fibromuscular Dysplasia Society of America
Foundation for Angelman Syndrome Therapeutics (FAST)
Foundation for Ichthyosis & Related Skin Types
Foundation for Prader-Willi Research
Foundation for Sarcoidosis Research
Foundation for USP-7 Related Diseases
Friedreich’s Ataxia Research Alliance
GBS/CIDP Foundation International
Global Foundation for Peroxisomal Disorders
Guthy-Jackson Charitable Foundation
Hemophilia Federation of America
Hereditary Leiomyomatosis & Renal Cell Cancer Family Alliance
Hereditary Neuropathy Foundation, Inc.
Hermansky-Pudlak Syndrome Network, Inc.
Histiocytosis Association, Inc.
Hope for Hypothalamic Hamartomas
Incontinentia Pigmenti International Foundation
Indian Organization for Rare Diseases
International Foundation for CDKL5 Research
International FOXG1 Foundation
International FPIES Association
International Neuroendocrine Cancer Alliance
International Pemphigus & Pemphigoid Foundation
International Rett Syndrome Foundation
International Sacral Agenesis/Caudal Regression Association (iSACRA)
International WAGR Syndrome Association
International Waldenstrom’s Macroglobulinemia Foundation
iSEEK Pulmonary Hypertension Hope Center
Julia’s Wings Foundation, Inc.
Kennedy’s Disease Association, Inc.
Klippel-Trenaunay Support Group
Li-Fraumeni Syndrome Association
Lowe Syndrome Association, Inc.
Lymphangiomatosis & Gorham’s Disease Alliance, Inc. (LGDA)
Martin Mueller IV Achalasia Awareness Foundation, Inc.
Mesothelioma Applied Research Foundation
Mila’s Miracle Foundation, Inc.
Morgan Leary Vaughan Fund, Inc.
Mowat-Wilson Syndrome Foundation
Mucolipidosis Type IV Foundation, Inc. (ML4Fdn)
Myasthenia Gravis Foundation of America, Inc.
National Adrenal Diseases Foundation
National Alopecia Areata Foundation
National Eosinophilia Myalgia Syndrome Network
National Foundation for Ectodermal Dysplasias
National Hemophilia Foundation
National Niemann-Pick Disease Foundation, Inc.
National Organization for Albinism and Hypopigmentation (NOAH)
National Spasmodic Dysphonia Association
National Tay-Sachs and Allied Diseases Association, Inc.
National Urea Cycle Disorders Foundation
NephCure Kidney International Foundation
Neuroendocrine Tumor Research Foundation
Osteogenesis Imperfecta Foundation
Parent Project Muscular Dystrophy
Parent to Parent New Zealand, Inc.
Parents of Infants and Children with Kernicterus (PICK)
Phelan-McDermid Syndrome Foundation
Platelet Disorder Support Association
Prader-Willi Syndrome Association (USA)
PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)
PTEN Hamartoma Tumor Syndrome Foundation
Pulmonary Hypertension Association
Rare Cancer Research Foundation
Recurrent Respiratory Papillomatosis Foundation
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Rothmund-Thomson Syndrome Foundation
Sanfilippo Children’s Foundation
Scleroderma Research Foundation
Shwachman-Diamond Syndrome Foundation
Soft Bones, Inc.: The US Hypophosphatasia Foundation
SSADH Association (Succinic Semialdehyde Dehydrogenase Deficiency)
Stevens Johnson Syndrome Foundation
Sudden Unexplained Death In Childhood (SUDC) Foundation
Taiwan Foundation for Rare Disorders
Tarlov Cyst Disease Foundation
The Mastocytosis Society, Inc.
The Multiple System Atrophy Coalition, Inc.
The Transverse Myelitis Association
Thisbe and Noah Scott Foundation
TNA – The Facial Pain Association
Turner Syndrome Society of the United States
United Leukodystrophy Foundation
United Mitochondrial Disease Foundation
US Hereditary Angioedema Association, Inc.
Vestibular Disorders Association (VEDA)
