International Pompe Association (original) (raw)
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.
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Over 50 organizations from around the world.
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