CAS National
The Canadian Addison Society
Support, education and advocacy for Canadians with Addison's disease and adrenal insufficiency.
Visit ↗Home/ Affiliated Organizations
We do this work together.
Many rare disease organizations across Ontario partner with us on advocacy, research and patient support. Each one brings deep expertise in their condition area — together, we represent more than a million Ontarians.
Patient organizations
ALS National
ALS Society of Canada
Research funding, community support and advocacy for people living with ALS.
Visit ↗CAPA National
Canadian Arthritis Patient Alliance
Patient-led education and advocacy for people living with arthritis.
Visit ↗XLH National
Canadian XLH Network
Awareness, advocacy and support for people living with X-linked hypophosphatemia.
Visit ↗CML National
Chronic Myeloid Leukemia Society of Canada
Support, education and treatment information for people living with CML.
Visit ↗CPFF National
Canadian Pulmonary Fibrosis Foundation
Support, education and research for the pulmonary fibrosis community.
Visit ↗SMA National
Cure SMA Canada
Family support and access advocacy for spinal muscular atrophy.
Visit ↗CF National
Cystic Fibrosis Canada / Vivre avec la fibrose kystique (VAFK)
Funding research and advocating for affordable access to CF therapies.
Visit ↗DDC National
Defeat Duchenne Canada
Research funding, family support and advocacy for Duchenne muscular dystrophy.
Visit ↗LCH National
Langerhans cell histiocytosis Association of Canada
Education, family support and research advocacy for histiocytic disorders.
Visit ↗IgAN National
IgAN Canada Hub
A Canadian registered nonprofit providing patient support, education and advocacy for people living with IgA nephropathy.
Visit ↗Mito National
MitoCanada
Support, awareness and research for mitochondrial disease.
Visit ↗MDC National
Muscular Dystrophy Canada
Service, research and advocacy for over 160 neuromuscular conditions.
Visit ↗CTMA National
Canadian Transverse Myelitis Association
Advocacy and support for rare neuroimmunologic diseases including transverse myelitis.
Visit ↗SCDAC National
The Sickle Cell Disease Association of Canada
Patient support, education and equity advocacy for the sickle-cell community.
Visit ↗WDA Canada Chapter
Wilson Disease Association, Canada Chapter
Advocacy and support for people living with Wilson disease.
Visit ↗aHUS National
aHUS Canada
A nationwide community and resource for Canadians affected by atypical hemolytic uremic syndrome.
Visit ↗ALD National
ALD Hope
Awareness, newborn-screening advocacy and family support for adrenoleukodystrophy.
Visit ↗ALSAC National
ALS Action Canada
Patient-led advocacy for faster access to ALS treatments and trials.
Visit ↗ASF Canada
Angelman Syndrome Foundation Canada
Support, education and financial assistance for families living with Angelman syndrome.
Visit ↗CFOPN National
Canadian FOP Network
Information, family support and research funding for fibrodysplasia ossificans progressiva.
Visit ↗SPG50 National
CureSPG50
Driving gene therapy and research for hereditary spastic paraplegia type 50.
Visit ↗PKD National
PKD Foundation of Canada
Research, education, advocacy and support for polycystic kidney disease.
Visit ↗GADA National
Genetic Aortic Disorders Association Canada
Education, support and research for hereditary aortic disorders including Marfan syndrome.
Visit ↗LFSA Canada Chapter
Li-Fraumeni Syndrome Association of Canada
Information, advocacy and support for families affected by Li-Fraumeni syndrome.
Visit ↗MPS National
Canadian MPS Society
Support, education, advocacy and research for MPS and related diseases.
Visit ↗PHA National
Pulmonary Hypertension Association of Canada
Patient support and treatment-access advocacy for the PH community.
Visit ↗CAP National
Canadian Association for Porphyria
Information, advocacy and peer support for people living with porphyria.
Visit ↗Run a rare-disease organization in Ontario? Let's talk.
We host a quarterly leaders' roundtable, share advocacy updates, and amplify member campaigns. Affiliation is free.