April 15, A Day of Reflection
April 15 is International Pompe Day. After losing too many patients the past few years, this year I’m filled with more questions than answers.
International Pompe Day – Moving On with Pompe!
The IPA believes that raising awareness about Pompe Disease is key, and for this year the theme that has been selected is “Moving On with Pompe”.
Rare Disease Day 2019
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.
CAP Walks for Muscular Dystrophy in 2018
Canadian Association of Pompe (CAP) members, their friends and families walked to support Muscular Dystrophy Canada (MDC) in 2018, raising over $13k.
Rare Disease Heroes
Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.
Rare Disease Day 2017 from CAP
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.
Meet Flash, the Eighth Limited Edition Collection Starlight Bear
Flash was designed with the help of 7 year old Noah, who lives with Pompe disease. Noah is a courageous young boy that was diagnosed with Pompe disease when he was 2, in 2011. In Noah’s case, this means he has an enlarged heart.
CORD Paints Parliament Yellow
March 9th and 10th, 2016 members of the Canadian Organization for Rare Disorders decended on Ottawa for their annual meeting and Awards Gala.
Rare Disease Day 2016
Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008. Since then it has spread with events all around the world that reach hundreds of thousands of people. Rare Disease Day always takes place on the last day of February.
Inequities Between Provinces in Treating Rare Diseases
John and Kelvin Dyck may be brothers, but the two men share more than a last name. They also have in common a rare condition called Pompe disease. The genetic disorder affects only about one in 40,000 people, and causes a progressive weakening of heart and skeletal