Webinar Details
Title: POMPE REGISTRY: 18 YEARS OF LEADERSHIP AND CONTRIBUTIONS
Date: Monday, April 11, 2022
Speaker:
Joseph Bender, MD, MBA, Global Head of Rare Disease Registries
Danielle Dong, ScM, CGC, Global Operations and Advocacy Lead Rare Disease Registries
Webinar Overview:
The Sanofi Genzyme Pompe Registry is a global, observational, and voluntary program designed to track natural history and outcomes of patients diagnosed with Pompe disease.
*After multiple conversations with Sanofi, the AMDA regrets to inform the Community that the recording of the recent AMDA Webinar on the Sanofi Pompe Registry will be removed from the AMDA website on May 31, 2022.
However, as a result of these conversations, the AMDA is pleased to say that Sanofi has committed to developing educational material regarding the Registry. We hope that this will be available soon, and will keep the Community posted on developments.
Please contact the AMDA at info@amda-pompe.org if you have any questions.