International Pompe Association

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 following mission:

Bringing 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 International Pompe Association in July 1999 as a part of an international congress on Pompe’s disease. At this meeting the objectives and policy of the IPA were discussed.

The following chapters have been derived from this discussion, in order to give a clear view of IPA’s mission and objectives.

The mission statement of the IPA is as follows:

  • Campaign for early diagnosis and effective, affordable and safe therapies for Pompe Disease
  • Strive to provide information and support to all patients, their families and others with interests in Pompe disease