February 28, 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.
Canadian Association of Pompe (CAP) members, their friends and families walked to support Muscular Dystrophy Canada (MDC) in 2018, raising over $13k.
February 28, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.
We were very honoured to accept the Kaitlyn Hatchard Award for Team Spirit for the Atlantic Region, given to both Annette and CAP, at our 2015 Conference in Montreal. The award was presented to Annette by Pascale Rousseau, Directrice des services – Division du Québec. This is a very special award, please read the letter below.
Canadian Association of Pompe would like to express its support to include Pompe disease in Provincial/territorial Newborn Screening panels.
We’re pleased to announce that the Canadian Association of Pompe is now listed on Orphanet. Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences.
Happy Rare Disease Day everyone! That does seem like an odd thing to say, but we celebrate the things that define our lives and for those of us that have a rare disease, it certainly plays a significant part in it.