Campaign for early diagnosis and effective, affordable and safe therapies. 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. Â
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Read the PompeConnections, an IPA brochure for patients with Pompe disease. It's available in 8 languages. A Treatment Edition is also available providing resources on the treatment of Pompe Disease.
Patients and parents contribute to the understanding of late-onset Pompe Disease. |
Since childhood I had onconventional, but otherwise accepted weaknesses. They were regarded as a child's expected particularities. The context was such that... ArnoArno is our only child. He was born, two weeks early, on the 7th of September 1992, after a normal pregnancy and a short and normal delivery. When he was... |
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