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.

Every Move Counts

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Community Adv Board

Composed of 23 members from 10 countries.


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

Patient Registries for Pompe Disease Survey

The IPA invites you to share your perspective about Patient Registries for Pompe disease.
Author: IPA
June 4, 2023
International Pompe Day-2023

2023: Every Move Counts

The IPA is excited to announce its plans for International Pompe Day. This year, we are focusing on...
Author: IPA
May 17, 2023