Genzyme Pompe Program Update—June 2007

Genzyme would like to take this opportunity to provide a brief update to the Pompe patient community regarding the US supply of Myozyme® (alglucosidase alfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of ... More). ...

MTAP Fact Sheet May 2007

MTAP, the Myozyme® (alglucosidase alfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of ... More) Temporary Access Program, is a clinical program to provide access to MyozymeA form of enzyme replacement therapy used to...

Genzyme Pompe Program Update—April 2007

As many of you are aware, a standard part of the biologics drug development process is to incrementally scale-up manufacturing capacity as demand for the product increases. During the development of Myozyme®, Genzyme began the manufacturing process using a smaller...

2006 Conference

2006 AMDA/IPA Conference Report By Allan Muir With contributions from George Fox and Jared Salbato Friday—November 17, 2006 Texas Hoe Down at Sea World Report by George Fox On Friday evening after check in and registration, the AMDA hosted a reception “Hoe Down” at...

AGSD (UK) Family Conference, October 16th 2005

Pompe Workshop Report Allan Muir, Pompe Representative, AGSD(UK) On October the 16th this year we held our annual AGSD (UK) family conference in Milton Keynes. For the Pompe Workshop we had a good number of families present and hopefully I left enough time in and...

Editorial: Review of “The Cure” by Geeta Anand

By: Marylyn House posted on: September 19, 2006 Dear All, I admit that I was wrong in my previous analysis of “The Cure:” an analysis which was based on summaries and reviews I found at Amazon.com. In fact, I must say that I was unexpectedly surprised while reading...

Editorial: Response to “The Cure” by Geeta Anand

By: Marylyn House posted on: September 02, 2006 (this response was written based on an expert found on Amazon.com and an article in the Wall Street Journal) Dear All, The following excerpt from Geeta Anand’s “story” on John Crowley can be found in the “Marketplace”...

Letter From IPA and Genzyme Concerning LOTS

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 MyozymeA form of enzyme replacement therapy used...