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.


Over 50 organizations from around the world.

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Composed of 23 members from 10 countries.


Spark Therapeutics Stops Its Pompe Program

The IPA has been informed that Spark Therapeutics has realigned its portfolio and made the difficult decision to...
Author: IPA
July 13, 2024

International Pompe Day: 15 April 2024 – Every Move Counts

Videos from the Pompe community illustrating how strength and resilience are gained through friendship.
Author: IPA
April 12, 2024
Cover - Approval

Amicus Therapeutics Announces Approval and Launch of New Pompe Disease Therapy in the European Union

Amicus Therapeutics announces that the European Commission (EC) has granted approval for Opfolda® (miglustat), an enzyme stabilizer of cipaglucosidase...
Author: IPA
June 28, 2023