Dear IPA members, Pompe patients, family members and GSD-net participants,

The IPA board received several questions concerning participation in the LOTS trial.

As there are certain restrictions to the market approval of Myozyme we asked Genzyme to make a written statement. Genzyme kindly provided us with such a statement which you will find attached to this letter.

We hope this will bring some clarity for everyone concerned and answers the questions raised by patients and their family members.

With warm regards,

Ria Broekgaarden

Download the complete letter on from this page.