Patient Advocacy Groups

A.T. Childrens Project

Acromegaly Community

ADNP Kids Research Foundation

Adult Polyglucosan Body Disease Research Foundation

Adult Sickle Cell Foundation of Nevada – Bridging the Gap

Advocacy & Awareness for Immune Disorders Association

Aidan Jack Seeger Foundation

Alagille Syndrome Alliance

Alport Syndrome Foundation

American Kidney Fund

Americas Health Foundation

Angelman Syndrome Foundation

Aplastic Anemia and M.D.S. International Foundation Inc

Asociación Gaucher de México

Associacao Brasileira De Paramiloidose

Autism Science Foundation

Axis Advocacy

Barth Syndrome Foundation

Batten Disease Support and Research Association

Ben's Friends

Beyond The Diagnosis

Bow Foundation

BPAN Warriors

Bridge the Gap -SYNGAP

Canadian MPS Society

Canadian Organization For Rare Disorders

Canadian Pituitary Patient Network

Caregiver Action Network

Cauda Equina Foundation

CDH International

Children's Tumor Foundation

Chinese Organization for Rare Disorders

Circadian Sleep Disorders Network

Cooley's Anemia Foundation

Costello Syndrome Family Network

CRMO Foundation

CSNK2A1 Foundation

Cure Blau Syndrome Foundation

Cure VCP Disease

CureCMT4J

CureDuchenne

Cure Mito Foundation

Cures Within Reach

CureSPG50

Curing Retinal Blindness Foundation

Cushing Support and Research Foundation

Cystic Fibrosis Foundation

Defeat MSA

Dreamsickle Kids Foundation

Dup15q Alliance

E.C.D. Global Alliance

Einstok Born

EURORDIS

EveryLife Foundation for Rare Diseases

FamilieSCN2A Foundation

FCS Foundation

Fibromuscular Dysplasia Society of America

Fibrous Dysplasia Foundation

Fighting For Kaiden Fondation

Foundation for Angelman Syndrome Therapeutics

Foundation For Prader Willi Research

Foundation for Sarcoidosis Research

Foundation Ichthyosis and Related Skin Types

FOXG1 Research Foundation

Friedreich's Ataxia Research Alliance

FSH Society Inc

Global Genes

Glut1 Deficiency Foundation

Hairy Cell Leukemia Foundation

Helping Hands for GAND

Hereditary Angioedema Association

Highway of Hope

Histiocytosis Association

Hopeful Science

Immune Deficiency Foundation

International Fibrodysplasia Ossificans Progressiva Association

International Prader-Willi Syndrome Organization

International Waldenstrom's Macroglobulinemia Foundation

Jett Foundation

Jonah's Just Begun

KBG Foundation

Kleine-Levin Syndrome Foundation

Little Hercules Foundation

Little Miss Hannah Foundation

Liv4TheCure

Loulou Foundation

Lymphangiomatosis & Gorham's Disease Allliance

Malan Syndrome Foundation

Malta National Alliance for Rare Diseases

Maltepe University/Medical Faculty

Mast Cell Hope

MCAS Hope Germany

Metro DC EDS & HSD Support Group

Mila's Miracle Foundation

Miracles For Mito

MLD Foundation

Muscular Dystrophy Association

Muscular Dystrophy UK

Narcolepsy Network

National Alliance of People with Rare Diseases - Bulgaria

National Ataxia Foundation

National Fragile X Foundation

National M.P.S. Society

National Niemann Pick Disease Foundation Inc

Neuromuscular Disease Foundation

Noonan Syndrome Foundation

NORD

Osteogensis Imperfecta Foundation

Patient Airlift Services

Perthes Kids Foundation

Phelan-McDermid Syndrome Foundation

Progeria Research Foundation

Project Alive

PTEN Hamartoma Tumor Syndrome Foundation

RACC-UK

Rare Bone Disease Alliance

Rare Kids Network

Reccurent Respiratory Papillomatosis Foundation

Reflex Sympathetic Dystrophy Syndrome Association RSDSA

Remember The Girls

Rubinstein Taybi Syndrome Childrens Foundation

Sara's Cure

Sarcoidosis of Long Island

Sickle Cell 101

Sickle Cell Community Consortium

Sickle cell intervention U.K

Sickle Cell Thalassemia Patients Network

Sickled Not Broken Foundation

Simons Foundation Clinical Research Associates

SMA Europe

Smith-Kingsmore Syndrome Foundation

Snyder Robinson Foundation

South Carolina Rare Action Network

Team Sanfilippo Foundation

Texas Rare Alliance

The Aarskog Foundation

The American Porphyria Foundation

The Chandler Project, Inc

The Cute Syndrome Foundation

The Jansens Foundation

The Myositis Association

The PAP Foundation

The Sickle Cell Association of New Jersey

The Sickle Cell Foundation of Tennessee

The Sturge-Weber Foundation

The Yellow Brick Road Project

Transient Global Amnesia Project

Tuberous Sclerosis Alliance

U.S. Food and Drug Administration (FDA)

United Leukodystrophy Foundation

United Porphyrias Association

United Spinal Association

Uplifting Athletes

Vancouver Acromegaly Support Group

Vasculitis Foundation

We CARE Journey Malaysia

White Sutton Syndrome Foundation

Wylder Nation Foundation