Patient Advocacy Sponsors:

 

 

Featured Rare Disease Advocacy Speakers Include:

 

Patient Groups attending in 2020:

 

  • A.T. Childrens Project
  • ADNP Kids Research Foundation
  • Adult Polyglucosan Body Disease Research Foundation
  • Advocacy & Awareness for Immune Disorders Association
  • Alagille Syndrome Alliance
  • Alport Syndrome Foundation
  • Americas Health Foundation
  • Angelman Syndrome Foundation
  • Aplastic Anemia and M.D.S. International Foundation Inc
  • Autism Science Foundation
  • Axis Advocacy
  • Barth Syndrome Foundation
  • Batten Disease Support and Research Association
  • Ben's Friends
  • Bow Foundation
  • Bridge the Gap -SYNGAP 
  • Canadian Organization For Rare Disorders
  • Canadian Organization for Rare Disorders 
  • Caregiver Action Network
  • Cauda Equina Foundation
  • CDH International
  • Children's Tumor Foundation
  • Circadian Sleep Disorders Network
  • Cooley's Anemia Foundation
  • Costello Syndrome Family Network
  • CRMO Foundation
  • CSNK2A1 Foundation
  • Cure Blau Syndrome Foundation
  • Cure VCP Disease
  • CureDuchenne
  • Cures Within Reach
  • CureSPG50
  • Cushing Support and Research Foundation
  • Cystic Fibrosis Foundation
  • Dreamsickle Kids Foundation
  • Dup15q Alliance
  • E.C.D. Global Alliance
  • Einstok Born
  • EURORDIS
  • 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
  • FOXG1 Research Foundation
  • Friedreich's Ataxia Research Alliance
  • FSH Society Inc
  • Glut1 Deficiency Foundation
  • Hairy Cell Leukemia Foundation
  • Helping Hands for GAND
  • Hereditary Angioedema Association
  • Highway of Hope
  • Hopeful Science
  • International Fibrodysplasia Ossificans Progressiva Association
  • International Prader-Willi Syndrome Organization
  • International Waldenstrom's Macroglobulinemia Foundation
  • Jett Foundation
  • Jonah's Just Begun
  • KLS Foundation
  • Little Hercules Foundation
  • Little Miss Hannah Foundation
  • Liv4TheCure
  • Loulou Foundation
  • Lymphangiomatosis & Gorham's Disease Allliance
  • Malta National Alliance for Rare Diseases
  • Mast Cell Hope
  • Mila's Miracle Foundation
  • Miracles For Mito
  • MLD Foundation
  • Muscular Dystrophy Association
  • Muscular Dystrophy UK
  • 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
  • Rare Bone Disease Alliance
  • Rare Kids Network
  • Reccurent Respiratory Papillomatosis Foundation
  • Reflex Sympathetic Dystrophy Syndrome Association RSDSA
  • Rubinstein Taybi Syndrome Childrens Foundation
  • Sara's Cure
  • Sarcoidosis of Long Island
  • Sickle Cell 101
  • Sickle cell intervention U.K
  • Sickle Cell Thalassemia Patients Network
  • Sickled Not Broken Foundation
  • Simons Foundation Clinical Research Associates
  • SMA Europe 
  • Snyder Robinson Foundation
  • Team Sanfilippo Foundation
  • Texas Rare Alliance
  • The Aarskog Foundation
  • The American Porphyria Foundation
  • The Chandler Project, Inc
  • The Jansens Foundation
  • The Myositis Association
  • The Sickle Cell Association of New Jersey
  • 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 Spinal Association
  • We CARE Journey Malaysia
  • Wylder Nation Foundation