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.

News

News - clinical trial - cover

Community Update: Denali Therapeutics Shares Update on DNL952 Study in Late-Onset Pompe Disease

Denali has officially begun recruitment for its clinical study evaluating DNL952 in adults living with Late-Onset Pompe Disease...
Author: IPA
News
September 18, 2026

A letter from Sanofi to the global Pompe community

A letter from Sanofi to the global Pompe community, regarding the disruption of supplies of their treatments for...
Author: IPA
News
August 12, 2026

Global supply constraints continue for Sanofi’s Pompe therapies

Supply constraints affecting Sanofi's Pompe disease treatments are expected to continue to affect patients in different parts of...
Author: IPA
News
August 8, 2026

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