(April 15th, 2015 / GZUS.PD.15.04.0967) Genzyme is pleased to recognize the Second Annual International Pompe Awareness Day. As a longtime partner of the International Pompe Association (IPA), we have a shared mission of raising Pompe disease awareness globally and commend the IPA for the creation of this important event. In celebration of International Pompe Awareness Day, we wanted to share two new initiatives with the community.
First, Genzyme is very pleased to announce the publication of a 10-year Pompe Registry Report for patients. This report is available to those patients who are enrolled in the Pompe Registry with a signed consent form, and can be obtained through treating physicians. The report will be made available in the coming weeks and months in different countries around the world subject to local approvals.
The Pompe Registry was created so that the medical community could have a greater understanding of Pompe disease and recognize clinical signs of patients with the disorder. This Registry is the world’s largest collection of data on Pompe patients and this critical information has given us tremendous new insights into Pompe disease, specifically in the areas of diagnosis and disease management.