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Campaign for early diagnosis and effective, affordable and safe therapies.
Strive to provide information and support to all patients, their families
and others with interests in Pompe disease. (IPA Mission)

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.

 

IPA Objectives
  • Stimulate research into the causes, treatment and prevention of Pompe disease
  • Stimulate the rapid application of research into the causes, treatment and prevention of Pompe disease
  • Promote early and accurate diagnosis and screening programs for Pompe disease
  • Support and encourage national organisations to obtain approval and reimbursement for therapies from government bodies and health providers
  • Encourage other organisations or individuals to establish a mechanism for all patients to gain access to therapies irrespective of their personal financial status
  • Encourage the formation and support the continued development of national Pompe organisations
  • Establish and maintain a key position with industry, researchers and individuals with interests in Pompe disease
  • Provide educational and informative publications through electronic and other media

 

IPA Statutes and By-laws
 
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