“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”.
Leading up to International Pompe Day, CAP did a #DYK awareness campaign on Twitter.
CRANBURY, N.J., April 06, 2017 (GLOBE NEWSWIRE) — Amicus Therapeutics (Nasdaq:FOLD), a global biotechnology company at the forefront of rare and orphan diseases, is supporting several activities during Fabry Disease Awareness Month and International Pompe Day.
What is International Pompe day? What does it mean? It’s pretty simple. The International Pompe Association (IPA), with the support of the global Pompe community, launched International Pompe Day in 2014. Like many official days the goal is to raise awareness, in this case, of what is often a devastating disease.
The Netherlands, (April 14, 2016) – April 15, 2016 will be the Third Annual International Pompe Day. The International Pompe Association (IPA), with the support of the global Pompe community, launched International Pompe Day in 2014. The goal of International Pompe Day is to raise global awareness of Pompe disease, a rare neuromuscular condition that affects approximately 1 in 40,000 people around the world.
The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day!