10-Mar-2010

Fabrazyme Short Supply for Fabry Patients in 2010

‘Stop Press! Do you receive Fabrazyme®? Are your symptoms changing on the reduce dosage?

Letter from Genzyme

If you are receiving reduced dose of Fabrazyme® please read on.

Through our links with Fabry support groups throughout the world, and through our own Australian members we are hearing that many people who are receiving Fabrazyme on reduced doses are starting to experience the return of some symptoms. If you are on Fabrazyme® ERT and are experiencing symptoms that you either have not had before OR had before the commencement of ERT it is very important that you
do the following:
1. Contact your Fabry Treatment Doctor and tell them the symptoms that you are experiencing.
2. Contact FSGA! We have been asked to report on how many patients are experiencing
returned symptoms since receiving rationed Fabrazyme®.
Please do not sit back and be patient and ‘put up’ with your symptoms as it may be assumed that the reduced dose of Fabrazyme® is working perfectly well for the majority of Fabry patients. This feedback is vitally important to you and your fellow Australian Fabry community