Isolated by their child’s rare illness, parents find connection online
July 9, 2018 Globe and Mail
She typed “Coffin-Siris syndrome” into Facebook’s search bar, a term that had eluded her since the birth of her daughter nearly eight years ago.…
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages…
Canadian Organization of Rare Disorders (CORD)
Canada's national network for organizations representing all those with rare disorders
University of Manitoba
Winnipeg Children’s Hospital
French boy's rare disease fight leads family to Canada
June 14, 2018 CTV News
At birth, doctors gave Julien Ferrer only a slim chance of surviving a rare childhood bone disease…
Montreal-based Enobia Pharma has developed ENB-0040, a drug that may help patients overcome the effects of hypophosphatasia...
Victoria BC to St John's NL
Dave Proctor - Fueled by the Rare Disease Community
On 2018 June 27 I will embark on a run starting in Victoria and ending in St John's 66 days later. This record breaking run will carry me the entire 7,200km across Canada… My son Sam struggles daily with a rare disease called Relapsing Encephalopathy with Cerebellar Ataxia...