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Member List

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.
Alone we are rare. Together we are strong.

A Cure for Ellie

A Cure in Sight

A Twist of Fate-ATS

Acid Maltase Deficiency Association (AMDA)

Acromegaly Community, Inc.

ADNP-Kids Research Foundation

Adrenal Insufficiency United (AIU)

Advocacy & Awareness for Immune Disorders Association (AAIDA)

Alagille Syndrome Alliance

All Things Kabuki

Alpha-1 Foundation

Alport Syndrome Foundation

ALS Association

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)

American Porphyria Foundation

Amniotic Fluid Embolism Foundation (AFE Foundation)

Amyloidosis Foundation

Amyloidosis Research Consortium, Inc.

Amyloidosis Support Groups, Inc.

APBD Research Foundation

Aplastic Anemia & MDS International Foundation, Inc.

Appendix Cancer/Pseudomyxoma Peritonei Research Foundation (ACPMP)

APS Type 1 Foundation

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)

Atypical HUS Foundation

Autoimmune Encephalitis Alliance

Autoimmune Hepatitis Association

Autoinflammatory Alliance

Barth Syndrome Foundation

Basal Cell Carcinoma Nevus Syndrome Life Support Network

Batten Disease Support and Research Association

Benign Essential Blepharospasm Research Foundation, Inc.

Bili Project Foundation

Bohring-Opitz Syndrome Foundation, Inc.

BORN A HERO, Pfeiffer’s Health and Social Issues Awareness

Bridge the Gap – SYNGAP Education and Research Foundation

Canadian CMTC Foundation

Canadian Organization for Rare Disorders

Canadian PBC Society

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

Children’s PKU Network

Children’s Tumor Foundation

Chloe’s Fight Rare Disease Foundation

Cholangiocarcinoma Foundation

Chromosome 18 Registry & Research Society

Chromosome Disorder Outreach, Inc.

Cicatricial Alopecia Research Foundation (CARF)

CLOVES Syndrome Community

Cluster Headache Support Group, Inc.

Clusterbusters, Inc.

CMTC-OVM Cutis Marmorata Telangiectatica


COL4A1 Foundation

Congenital Hyperinsulinism International

Consortium of Multiple Sclerosis Centers

COPA Syndrome Foundation

Cornelia de Lange Syndrome Foundation, Inc.

Cure CMD (Congenital Muscular Dystrophy)

Cure HHT Foundation

Cure SMA


CurePSP, Inc.

Curing Retinal Blindness Foundation

Cushing’s Support and Research Foundation, Inc.

Cutaneous Lymphoma Foundation

Cystic Fibrosis Foundation

Cystinosis Research Network, Inc.

Danny’s Dose Alliance

Defeat MSA

Desmoid Tumor Research Foundation

Dravet Syndrome Foundation, Inc.

Dup 15q Alliance

ECD Global Alliance

Erythromelalgia Association

EURORDIS- Rare Diseases Europe

Familial Dysautonomia Foundation

Family Caregiver Alliance

Fanconi Anemia Research Fund, Inc.

Fat Disorders Research Society, Inc.

Fibrolamellar Cancer Foundation (FCP)

Fibromuscular Dysplasia Society of America

Fibrous Dysplasia Foundation

Foundation Fighting Blindness

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

FPIES Foundation

Friedreich’s Ataxia Research Alliance

Galactosemia Foundation

GBS/CIDP Foundation International

Genetic Alliance

Genetic Alliance Australia

Global Foundation for Peroxisomal Disorders

Glut1 Deficiency Foundation

Gut Check Foundation

Guthy-Jackson Charitable Foundation

HCU Network America

HCU Network Australia

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

HSAN1E Society

Hydrocephalus Association

Hyper IgM Foundation, Inc.

Immune Deficiency Foundation

Incontinentia Pigmenti International Foundation

Indian Organization for Rare Diseases

International FOP Association

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


Jack McGovern Coats Disease Foundation

Joshua Frase Foundation

Julia’s Wings Foundation, Inc.

KAT6A Foundation

Kennedy’s Disease Association, Inc.


Klippel-Trenaunay Support Group


LAL Solace, Inc.

Legg Calve Perthes Foundation

Li-Fraumeni Syndrome Association

Life Raft Group

Lipoprotein A Foundation

Lowe Syndrome Association, Inc.

Lung Transplant Foundation

Lymphangiomatosis & Gorham’s Disease Alliance, Inc. (LGDA)

M-CM Network

Marfan Foundation

Martin Mueller IV Achalasia Awareness Foundation, Inc.

MDS Foundation, Inc.

MEBO Research, Inc.

Melorheostosis Association

Mesothelioma Applied Research Foundation

Mila’s Miracle Foundation, Inc.


MLD Foundation

Moebius Syndrome Foundation

Morgan Leary Vaughan Fund, Inc.

Mowat-Wilson Syndrome Foundation

MPN Research Foundation

MSUD Family Support

Mucolipidosis Type IV Foundation, Inc. (ML4Fdn)

Myasthenia Gravis Foundation of America, Inc.

Myocarditis Foundation

Myositis Association

Myotonic Dystrophy Foundation

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 Health Council

National Hemophilia Foundation

National MPS Society, Inc.

National Niemann-Pick Disease Foundation, Inc.

National Organization for Albinism and Hypopigmentation (NOAH)

National PKU Alliance

National PKU News

National Spasmodic Dysphonia Association

National Tay-Sachs and Allied Diseases Association, Inc.

National Urea Cycle Disorders Foundation

NBIA Disorders Association

NephCure Kidney International Foundation

Neuroendocrine Tumor Research Foundation

Neurofibromatosis Network

Neurofibromatosis Northeast

NICER Foundation

NTM Info & Research, Inc.

Ocular Melanoma Foundation

Oley Foundation

OMSLife Foundation

Organic Acidemia Association

Osteogenesis Imperfecta Foundation

Parent Project Muscular Dystrophy

Parent to Parent New Zealand, Inc.

Parents of Infants and Children with Kernicterus (PICK)

PCD Foundation

PHACE Syndrome Community

Phelan-McDermid Syndrome Foundation

Pheo Para Alliance

Pituitary Network Association

PKD Foundation

Platelet Disorder Support Association

Prader-Willi Syndrome Association (USA)

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

PRP Alliance, Inc.

PSC Partners Seeking a Cure

PTEN Hamartoma Tumor Syndrome Foundation

Pulmonary Fibrosis Foundation

Pulmonary Hypertension Association

PURA Syndrome Foundation

Rare & Undiagnosed Network

Rare Cancer Research Foundation

Rare Kids Network

RASopathies Network USA

Recurrent Respiratory Papillomatosis Foundation

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Rett Syndrome Research Trust

Rothmund-Thomson Syndrome Foundation

RYR-1 Foundation

Sanfilippo Children’s Foundation

Sarcoma Foundation of America

SBS Cure Project

Scleroderma Foundation

Scleroderma Research Foundation

SETBP1 Society

Shwachman-Diamond Syndrome Foundation

Sick Cells

Sitosterolemia Foundation

Snyder-Robinson Foundation

Sofia Sees Hope

Soft Bones, Inc.: The US Hypophosphatasia Foundation

Spastic Paraplegia Foundation

Spina Bifida Association

Spinal CSF Leak Foundation

SSADH Association (Succinic Semialdehyde Dehydrogenase Deficiency)

Stevens Johnson Syndrome Foundation

Sudden Unexplained Death In Childhood (SUDC) Foundation

Taiwan Foundation for Rare Disorders

Talia Duff Foundation, Inc.

TANGO2 Research Foundation

TargetCancer Foundation

Tarlov Cyst Disease Foundation

Team Audrey

Team Telomere, Inc.

Tess Research Foundation

The Avalon Foundation

The Calliope Joy Foundation

The Ehlers-Danlos Society

The Jansen’s Foundation

The LAM Foundation

The Mastocytosis Society, Inc.

The Multiple System Atrophy Coalition, Inc.

The Myelin Project

The Transverse Myelitis Association

Thisbe and Noah Scott Foundation

TNA – The Facial Pain Association

Tuberous Sclerosis Alliance

Turner Syndrome Society of the United States

United Leukodystrophy Foundation

United Mitochondrial Disease Foundation

United MSD Foundation

US Hereditary Angioedema Association, Inc.

Vasculitis Foundation

Vestibular Disorders Association (VEDA)

VHL Alliance

Wilhelm Foundation

Williams Syndrome Association

Wilson Disease Association

Worldwide Syringomyelia & Chiari Task Force, Inc.

XLH Network Inc.