Affiliate Members

Affiliate Members

Listed below are our affiliate / group members. Corporate members are listed in Corporate Leaders.

  • Acromegaly Canada
  • Acromegaly Ottawa Awareness & Support Network
  • aHUS Canada
  • AKU Society
  • Alpha-1 Canada
  • Alagille Syndrome Alliance
  • ALS Action Canada
  • ALS Society of British Columbia
  • Angioma Alliance Canada
  • Answering TTP Foundation
  • Aplastic Anemia Myleodysplasia Association of Canada
  • Association for Creatine Deficiencies
  • Atlantic Acromegaly Support Society
  • Batten Disease Support and Research Association
  • Barth Syndrome Foundation of Canada
  • Behcet’s Canada
  • Bethany’s Hope Foundation
  • CACHEducation
  • CACNA1A Foundation
  • Canadian Ammunocompromised Advocacy Network
  • Canadian Association of PNH Patients
  • Canadian Association for Porphyria/Association Canadienne de Porphyrie
  • Canadian Association of Pompe
  • Canadian Association of Psoriasis Patients
  • Canadian Autoinflammatory Network
  • Canadian Cancer Survivor Network
  • Canadian Chapter BDSRA
  • Canadian Cholangiocarcinoma Collaborative (C3)
  • Canadian CTNNB1 Advocacy Network
  • Canadian Fabry Association
  • Canadian Fanconi Anemia Research Fund
  • Canadian FOP Network
  • Canadian Hemophilia Society
  • Canadian MPN Network
  • Canadian MPN Research Foundation
  • Canadian MPS Society
  • Canadian Organization for Rare Disorders Student Association
  • Canadian Osteogenesis Imperfecta Society
  • Canadian PBC Society
  • Canadian Pituitary Patient Network
  • Canadian PKU and Allied Disorders Inc.
  • Canadian Pulmonary Fibrosis Foundation
  • Canadian Skin Patient Alliance
  • Canadian Society for Relapsing Polychondritis
  • Canadian VHL Alliance
  • Canadian XLH Network
  • CFA
  • CDKL5 Canada
  • Children’s Hospital LHSC and Department of Pediatrics Western University, London
  • Chordoma Foundation
  • Choroideremia Research Foundation of Canada
  • Chromosome 22 Central
  • CMTC-OVM
  • Coalition to Cure CHD2
  • Conner’s Crusade
  • CUL3 Support & Awareness
  • Cure SMA Canada
  • Cure VCP Disease, Inc.
  • Cystic Fibrosis Canada
  • CSNK2A1 Foundatio
  • DEBRA Canada
  • Defeat Multiple System Atrophy (MSA) Canada / Vaincre l’Atrophie Multisystématisée (AMS) Canada
  • Dup15q Alliance
  • Ehealthwrites
  • Fighting Blindness Canada
  • Foundation for Angelman Syndrome Therapeutics Canada
  • FSHD Canada Foundation
  • GBS/CIDP Foundation of Canada
  • Genetic Aortic Disorders Association Canada
  • GIST Sarcoma Life Raft Group Canada
  • HAE Canada
  • Heal Canada
  • Hereditary Amyloidosis Canada
  • Holland Bloorview Kids Rehabilitation Hospital
  • Huntington Society of Canada
  • Idic15Canada
  • ImmUnity Canada
  • Indian Organization for Rare Diseases
  • International Pemphigus Pemphigoid Foundation
  • Kidney Cancer Canada
  • Li-Fraumeni Syndrome Association – Canada
  • LifeRaft group Canada
  • Loeys Dietz Syndrome Foundation Canada
  • Malan Syndrome Foundation
  • Mastocytosis Society Canada (MSC)
  • McGill University
  • MitoCanada Foundation
  • Migraine Canada
  • MPN Ontario Patient Support
  • Myeloma Canada
  • National Gaucher Foundation of Canada
  • NCBRS Worldwide Foundation
  • Network of Rare Blood Disorder Organizations (NRBDO)
  • Ontario Rett Syndrome Association
  • Peer Medical Foundation
  • PFIC Advocacy and Resource Network
  • PHA Canada
  • PhenoTips
  • PKD Foundation of Canada
  • Platelet Disorder Support Association
  • PSC Partners Seeking a Cure Canada
  • Pseudomyxoma Survivor
  • Pulmonary Hypertension Association of Canada
  • Rare Disease Foundation
  • Rare Disease Review Western
  • Regroupement québécois des maladies orphelines (RQMO)
  • Save Your Skin Foundation
  • Scleroderma Canada
  • Scleroderma Society of Ontario
  • Scleroderma Atlantic
  • SCN8A Canada
  • Soft Bones Canada
  • SUDEP Aware
  • Thalassemia Foundation of Canada
  • The Aarskog Foundation
  • The Anti-NMDA Receptor Encephalitis Foundation
  • The Canadian Addison Society
  • The Cute Syndrome Foundation- SCN8A Disorders
  • The Canadian CML Network
  • The Canadian Society for Relapsing Polychondritis
  • The Foundation Fighting Blindness
  • The Hospital for Sick Children
  • Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST)
  • Turner Syndrome Society of Canada
  • Tumour Foundation of BC
  • Vancouver Acromegaly Support Group
  • Vasculitis Foundation Canada
  • VHL Canada
  • Waldenstrom’s Macroglobulinemia Foundation of Canada
  • XLID98 Foundation