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. |
Benthe was born in Hengelo hospital on 2nd November 2004. On first appearance everything seemed normal. She was allowed to come home with us. The next morning... RaymondI was diagnosed in 2002 at the age of 51, Pompe is not a new visitor to our family, as my brother passed away at 54 years old, due to Pompe. When I was first... |
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