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.


Read more about IPA Objectives...


IPD Logo

The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day!

The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day is "Together We Are Strong". The IPA encourages everyone to become involved in our inaugural International Pompe Day to show how STRONG our Community is – both in numbers and in passion!

There are several ways that you can participate!

Read more...


Portrait to promote patient participation

Patients and parents contribute to the understanding of late-onset Pompe Disease.

Find out more...



Read the PompeConnections, an IPA brochure for patients with Pompe disease. In addition, a Treatment Edition provides resources on the treatment of Pompe Disease. The brochures are available in many languages. If you can provide support to add a language please contact the IPA.

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