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 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!

Upload a photo to the International Pompe Day website.

• The photo can be of you, your family and friends, or community showing what "Together We Are Strong" means to you!
• Please use the Upload Form for uploading your photo.

Participate in the International Pompe Day Art Contest!

• There will be four categories for the contest: Ages 0-5; 6-10; 11-18; 18+
• Participants can submit an essay, photo, drawing/artwork, etc that depicts what "Together We Are Strong" means to them.
• The deadline for submissions is April 1, 2014 and winners will be announced on April 15, 2014.
• More information: Official Rules, Online Entry Form.

Become a Supporter!

• Organizations are invited and encouraged to become Supporters of International Pompe Day by submitting their logo (or name) for publication on the International Pompe Day website.
• Please email your logo to This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Buy Your Official International Pompe Day Merchandise!

• Merchandise is available at the International Pompe Day Shop on Cafe Press.
• The Shop is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe Disease Awareness.