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. |
I was first diagnosed in 1983, by Professor John Hopwood’s facilities at the Adelaide Children’s Hospital. My particular genetic mutations have since been... NicoNico, our younger son, was born in 1997. During his first months everything seemed normal – he learned to turn over and he started to crawl. It was only... |
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