International Pompe Day 2014
The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day!
Story Telling For Health – A Workshop for the Rare Disease Community
Hosted by the National Gaucher Foundation of Canada & facilitated by Emma Rooney, developer of www.mynormal.ca. You’ll leave this workshop with practical ideas and next steps for how to get started on your own story project.
2013 CAP Meeting – Save the Date!
The 2013 Canadian Association of Pompe National Meeting will be held in Toronto, June 8-9.
Flashmob Rare Disease Day, Amsterdam
The Dutch Rare Disease Day was celebrated in Amsterdam. A big surprise was planned for all participants. The Dutch Genzyme team, in close collaboration with the organizing committee, had organized an unannounced spectacular end to the meeting!