Recent Posts
Sanofi Genzyme COVID-19 Update
At this time, Sanofi Genzyme does not anticipate shortages for patients resulting from the COVID-19 situation.
Amicus Therapeutics’ Clinical Trials During the COVID-19 Outbreak
Patients enrolled in all clinical studies for AT-GAA for Pompe disease, including the PROPEL pivotal study, will continue to receive study drug.
Amicus Therapeutics Provides Updates for AT-GAA for Pompe Disease
Amicus Therapeutics today announced clinical, regulatory and manufacturing advancements for AT-GAA.
IPA Update – Q4 2019
The latest newsletter from the International Pompe Association.
Astellas Enters into Definitive Agreement to Acquire Audentes Therapeutics
This development should provide Audentes with additional resources for their gene therapy programs, including a Phase 1/2 study for Pompe disease.
What is Pompe disease?
Pompe disease is one of about 50 Lysosomal Storage Disorders. Pompe patients are deficient in the critical enzyme acid alpha-glucosidase.
Connections
Ways to connect with other patients & families and social media opportunities to stay informed.
New Patients and Families
Welcome to the wonderful world of rare disease. It’s a much different world than it was a few years ago. There’s so much information out there, and there are places to turn for support and friendship. With social media, especially Facebook and Twitter, there are answers.
There are patient advocacy groups all over the world, of which CAP is one of them.
New Brunswick, 2014
Out of a stormy cloud comes a whole bunch o’ crazy people waving their hands… at the 2014 Fredericton Walk for Muscular Dystrophy. We were fortunate to gather in New Brunswick for our 2014 CAP Conference and were humbled to be presented with the Kaitlyn Hatchard Award with Annette Sebey.
Contact Us
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Mailing Address
112-3201 Wilson St
Penticton, BC,
Canada
V2A 8J3