AMDA Press Release Regarding Extraordinary Measures

Jan 20, 2010 | NEWS

The AMDA issued a press release regarding the film, Extraordinary Measures. The press release can be found here. In addition, the AMDA created a one-page fact sheet regarding Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen,...

December 2009 Pompe Program Update

Dec 4, 2009 | NEWS

Genzyme would like to provide an update to the US Pompe community about the status of the Alglucosidase AlfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of ... More Temporary Access Program (ATAP) and the application...

Pompe Disease—By a Pompe Patient

Dec 1, 2009 | EDITORIALS

By Dawn Harris Kendall posted on: December 01, 2009 Living with Pompe Elizabeth Nunnery takes her infant daughter, Zoe, to the hospital at 8:30 in the morning.  A nurse verifies Zoe’s medical information and hooks Zoe up to machines monitoring her blood oxygen level,...

Influenza Vaccinations and Pompe Disease

Nov 27, 2009 | NEWS

Guidelines from Erasmus Medical Centre, Rotterdam, the Netherlands As a guideline we recommend that all patients with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More are vaccinated against...

November 2009 Pompe Program Update from Genzyme

Nov 17, 2009 | NEWS

Genzyme would like to provide an update to the US Pompe community about the status of the application for Lumizyme™ (alglucosidase alfaA form of enzyme replacement therapy used to treat Pompe disease by providing a lab-made version of ... More) produced at the 2000 L...

Genzyme’s Second Quarter Earnings Statement

Jul 23, 2009 | NEWS

In their second quarter earning statement, Genzyme provided an update on the situation at the Allston manufacturing plant, and the US Lumizyme application. To read full statement, please click here.

Changing Lives—UTSA Sombrilla

Jul 20, 2009 | EDITORIALS

By: Jason B. Johnson posted on: July 20, 2009 Published in University of Texas San Antonio’s Sombrilla Magazine: Summer 2009 Tiffany House was just 11 when she was diagnosed with a rare and often fatal disease called Acid Maltase Deficiency. Doctors told her she...