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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...

 

PompeConnections

PompeConnections and PompeConnections Treatment Edition: your source for Pompe related information. Available in Multiple Languages. Topics include:

  • Adapting to living with Pompe diesease
  • Breating problems
  • Nutrition and dietary therapy
  • Exercise and physical therapy
  • Having children when you have Pompe disease

The PompeConnections contain medical reviewed and approved information from experts around the world. Many brochures have been revised and updated recently.

 

Clinical Trials are listed on www.clinicaltrials.gov. Find Pompe studies by entering the search term "Pompe". You can further narrow the search results by ticking "Include only open studies", or click "On a map" to select study locations. You will find even more options when clicking around a little...

Here are some quicklinks for your convenience:


Disclaimer: The IPA does not endorse any of the products, medications, treatments or information reported herein. Articles on the IPA web pages are intended for informational purposes, only. We strongly advise that you discuss all medications, treatments, and/or products with your physician.


 

Portrait to promote patient participation

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

Find out more...

 
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