“If you look for a silver lining, you’ll find something sweet—for me it was meeting all of the wonderful people I have connected with through the process of navigating life with Pompe.”
“Hey I’ve fallen and can’t get up. Throw me a pillow and some crumbs…”
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.
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”.
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.
Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.
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.
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.
March 9th and 10th, 2016 members of the Canadian Organization for Rare Disorders decended on Ottawa for their annual meeting and Awards Gala.