Welcome to the International Pompe Association (IPA)
(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.
Amicus Therapeutics Honors Fabry Disease Awareness Month and International Pompe Day
CRANBURY, N.J., April 9, 2015 (GLOBE NEWSWIRE) -- Amicus Therapeutics (Nasdaq:FOLD), a biopharmaceutical company at the forefront of therapies for rare and orphan diseases, will support several activities surrounding Fabry Disease Awareness Month and International Pompe Day. The Fabry community has designated the month of April to honor and recognize those who are affected by the disease and to promote greater awareness of the disease. The goal of the Second International Pompe Day on April 15 is to foster international awareness of Pompe disease...
Disclaimer: The IPA does not endorse any of the products, medications, treatments or information reported herein. Articles on the IPA web pages are intended for informational purposes, only. We strongly advise that you discuss all medications, treatments, and/or products with your physician.
The International Pompe Association (IPA) is excited about our plan to host an international fundraiser for the Second Annual International Pompe Day (April 15, 2015). And we need YOUR help!
As with selecting the date, logo, and slogan for International Pompe Day, the IPA would like to ask the international Pompe community for its help in choosing a fundraiser “theme". Most people are aware of the extreme success of the ALS Ice Bucket Challenge. What made it so successful is that it: (1) was easy for people to do; (2) it was more or less free (just needed a bucket, ice, and water); and (3) it was fun for others to watch online! We have received five (5) terrific suggestions for potential fundraisers and now we need YOUR help in choosing OUR fundraiser!
Please visit the International Pompe Day website and cast your vote today! Vote for the fundraiser suggestion that you can't wait to be a part of!