Member List
NORD was founded on the principles of collaboration and a united voice, and are proud to work closely with more than 330 dedicated member organizations. Together, we work on advocacy, research, patient assistance, education, access, empowerment and much more.
Achalasia Awareness Organization
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 Multiple Endocrine Neoplasia Support
American Partnership for Eosinophilic Disorders (APFED)
Amniotic Fluid Embolism Foundation (AFE Foundation)
Amyloidosis Research Consortium, Inc.
Amyloidosis Support Groups, Inc.
Angelman Syndrome Foundation, 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 for Multiple Endocrine Neoplasia Disorders
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
ASXL Rare Research Endowment (ARRE) Foundation
Autoimmune Encephalitis Alliance
Autoimmune Hepatitis Association
Batten Disease Support and Research Association
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
Children’s Craniofacial Association
Chondrosarcoma Foundation, Inc.
Choroideremia Research Foundation, Inc.
Chromosome 18 Registry & Research Society
Chromosome Disorder Outreach, Inc.
Chronic Recurrent Multifocal Osteomyelitis Foundation (CRMO)
Cicatricial Alopecia Research Foundation (CARF)
CMT Research Foundation (CMTRF)
CMTC-OVM Cutis Marmorata Telangiectatica
Congenital Hyperinsulinism International
Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders
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.
Cystic Fibrosis Research, Inc.
Cystinosis Research Network, Inc.
Desmoid Tumor Research Foundation
Erdheim-Chester Disease Global Alliance
EURORDIS- Rare Diseases Europe
FACES: The National Craniofacial Association
Familial Dysautonomia Foundation
Fanconi Anemia Research Fund, Inc.
Fat Disorders Resource Society
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
Gould Syndrome Foundation (COL4a1/COL4A2)
Guthy-Jackson Charitable Foundation
Hemophilia Federation of America
Hereditary Neuropathy Foundation, Inc.
Hermansky-Pudlak Syndrome Network, Inc.
Histiocytosis Association, Inc.
Hope for Hypothalamic Hamartomas
Indian Organization for Rare Diseases
International Advocate For Glycoprotein Storage Diseases
International Autoimmune Encephalitis Society
International Foundation for CDKL5 Research
International Foundation for Gastrointestinal Disorders
International FOXP1 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
Jack McGovern Coats Disease Foundation
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.
Mila’s Miracle Foundation, Inc.
Mowat-Wilson Syndrome Foundation
Mucolipidosis Type IV Foundation, Inc. (ML4Fdn)
Muscular Dystrophy Association
Myasthenia Gravis Foundation of America, Inc.
National Adrenal Diseases Foundation
National Eosinophilia Myalgia Syndrome Network
National Foundation for Ectodermal Dysplasias
National Hemophilia Foundation
National Leiomyosarcoma Foundation
National Median Arcuate Ligament Syndrome Foundation, Inc.
National Niemann-Pick Disease Foundation, Inc.
National Organization for Albinism and Hypopigmentation (NOAH)
National Tay-Sachs and Allied Diseases Association, Inc.
National Urea Cycle Disorders Foundation
Neuroendocrine Tumor Research Foundation
Neuromuscular Disease Foundation
NORD’s™ Rare Cancer Coalition™ (RCC)
Organization for Rare Diseases India
Osteogenesis Imperfecta Foundation
Parent Project Muscular Dystrophy
Parent to Parent New Zealand, Inc.
Patient AirLift Services (PALS)
Phelan-McDermid Syndrome Foundation
Platelet Disorder Support Association
Prader-Willi Syndrome Association (USA)
Primary Ciliary Dyskinesia Foundation
PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network
PTEN Hamartoma Tumor Syndrome Foundation
Pulmonary Alveolar Proteinosis Foundation, Inc.
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
Shwachman-Diamond Syndrome Foundation
Sickle Cell Association of Houston, Inc.
Sickle Cell Association of Texas Marc Thomas Foundation
Sickle Cell Disease Association of America, Inc.
Siegel Rare Neuroimmune Association
Smith-Kingsmore 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
Superficial Siderosis Research Alliance, Inc.
Superior Mesenteric Artery Syndrome Research Awareness and Support
Taiwan Foundation for Rare Disorders
Tarlov Cyst Disease Foundation
Tatton Brown Rahman Syndrome Community
The Bonnell Foundation: Living with Cystic Fibrosis
The Mast Cell Disease Society, Inc.
The Multiple System Atrophy Coalition, Inc.
The Progeria Research Foundation
Turner Syndrome Society of the United States
United Leukodystrophy Foundation
United Mitochondrial Disease Foundation
Vestibular Disorders Association (VEDA)
NORD discourages third-party solicitation of organizations listed in our organizational database and does not allow any commercial or non-commercial email messaging sent en mass to our member organizations. Organizations listed on our website are listed to provide connections by patients, caregivers, supporters, researchers and other stakeholders who have a vested interest in receiving support, services or other needs through these groups. We do not allow the collection of emails for a solicitation or promotion that does not serve or benefit their specific disease community directly.
