Campaign for early diagnosis and effective, affordable and safe therapies.
Strive to provide information and support to all patients, their families
and others with interests in Pompe disease. (IPA Mission)

The International Pompe Association (IPA) is a federation of Pompe disease patient's groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups. On the 20th of March 1998, in addition to a national meeting of the Dutch Congenital and Metabolic Diagnosis Group, people involved with Pompe’s disease from different international organisations met with the goal to bring together worldwide positive energy in order to help Pompe patients and their families improving the quality of their lives. This gathering led to the organisation of the First Official Meeting of the IPA in July 1999 as a part of an international congress on Pompe disease. Today, the IPA is an incorporated society (registered in the Netherlands), lead by a Board consisting of international volunteers.

For contact data please scroll down to the footer of this website.

 

The First Annual International Pompe Day will be held in 2014. To make International Pompe Day a success, the IPA wants to include the International Pompe Community in organizing the event. We are an international community, and we will need international support.

Voting is open on the International Pompe Day page until Friday, April 5, 2013.

IPA Board