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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