To Top

Member List

NORD was founded on the principles of collaboration and a united voice, and are proud to work closely with over 260 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 in Sight

A Twist of Fate-ATS

Acid Maltase Deficiency Association (AMDA)

Acoustic Neuroma Association

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

AlphaNet, Inc.

Alport Syndrome Foundation

ALS Association

Alternating Hemiplegia of Childhood Foundation (AHCF)

American Autoimmune & Related Diseases

American Behçet’s Disease Association

American Brain Tumor Association

American Cleft Palate-Craniofacial Association

American Multiple Endocrine Neoplasia Support

American Partnership for Eosinophilic Disorders (APFED)

American Porphyria Foundation

American Syringomyelia & Chiari Alliance Project, Inc.

Amniotic Fluid Embolism Foundation (AFE Foundation)

Amyloidosis Foundation

Amyloidosis Research Consortium, Inc.

Amyloidosis Support Groups, Inc.

Annabelle’s Challenge

Answering T.T.P. (Thrombotic Thrombocytopenic Purpura) Foundation

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 Hepatitis Association

Autoinflammatory Alliance

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 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.

Chronic Granulomatous Disease Association, Inc.

Cicatricial Alopecia Research Foundation (CARF)

CLOVES Syndrome Community

Cluster Headache Support Group, Inc.

Clusterbusters, Inc.

CMTC-OVM Cutis Marmorata Telangiectatica


Congenital Hyperinsulinism International

Consortium of Multiple Sclerosis Centers

Cornelia de Lange Syndrome Foundation, Inc.

Cure HHT Foundation

Cure SMA


CurePSP, Inc.

Curing Retinal Blindness Foundation

Cushing’s Support and Research Foundation, Inc.

Cutaneous Lymphoma Foundation

Cutis Laxa Internationale

Cystic Fibrosis Foundation

Cystinosis Research Network, Inc.

Daybreak Children’s Rare Disease Fund

Desmoid Tumor Research Foundation

Dravet Syndrome Foundation, Inc.

Dup 15q Alliance

Dysautonomia Foundation, Inc.

Dyskeratosis Congenita Outreach, Inc.

ECD Global Alliance

Erythromelalgia Association

EURORDIS- Rare Diseases Europe

Family Caregiver Alliance

Family Support Network of North Carolina

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 Syndrome

Foundation for Sarcoidosis 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.

Illness Challenge Foundation

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 Myeloma Foundation

International Pemphigus & Pemphigoid Foundation

International Rett Syndrome Foundation

International WAGR Syndrome Association

International Waldenstrom’s Macroglobulinemia Foundation


Jack McGovern Coats Disease Foundation

Joshua Frase Foundation

Julia’s Wings Foundation, Inc.

Kennedy’s Disease Association, Inc.


Klippel-Trenaunay Support Group

LAL Solace, Inc.

Li-Fraumeni Syndrome Association

Liam’s Land Organization, Inc

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

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 Health Council

National Lymphedema Network, Inc.

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

NICER Foundation

NTM Info & Research, Inc.

Ocular Melanoma Foundation

Oley Foundation

OMSLife Foundation

Organic Acidemia Association

Osteogenesis Imperfecta Foundation

Pancreatic Cancer Action Network

Parent Project Muscular Dystrophy

Parent to Parent New Zealand, Inc.

Parkinson’s Disease Foundation, Inc.

PCD Foundation

PHACE Syndrome Community

Phelan-McDermid Syndrome Foundation

Pitt Hopkins Research Foundation

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

Pulmonary Fibrosis Foundation

Pulmonary Hypertension Association

PURA Syndrome Foundation

Rare & Undiagnosed Network

Rare Cancer Research Foundation

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

Shwachman-Diamond Syndrome Foundation

Sitosterolemia Foundation

Snyder-Robinson Foundation

Sofia Sees Hope

Soft Bones, Inc.: The US Hypophosphatasia Foundation

Spastic Paraplegia Foundation

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.

TargetCancer Foundation

Tarlov Cyst Disease Foundation

Tess Research Foundation

The Calliope Joy Foundation

The Jansen’s Foundation

The LAM Foundation

The Mastocytosis Society, Inc.

The Multiple System Atrophy Coalition, Inc.

The Myelin Project

The Transverse Myelitis Association

TNA – The Facial Pain Association

Tourette Association of America

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.