TOP NEWS
2025 New Year Letter From AMDA President – Tiffany House
As we enter a new year, the Acid Maltase Deficiency Association (AMDA) wants to thank you for your unwavering support and dedication. Together, we have navigated through challenges and made significant strides for the Pompe community. Your support fuels our commitment...
OTHER NEWS
Pompe Patient Meeting Hosted by Columbia University
Dr. Maryam Banikazemi of Columbia University is hosting a meeting for Pompe patients on July 16, 2010 in New York, New York. The expert panel of speakers will include Drs. J. Bach, A. Slonim, T. Goldberg, and M. Banikazemi. For more details, please download meeting...
Pompe Program Update—FDA Approves Lumizyme
On May 24, 2010 the FDA approved Genzyme’s Lumizyme for the treatment of patients with Pompe disease who are over 8 years of age and do not have evidence of cardiac hypertrophy. For more information on the approval and how to access treatment, please read the Pompe...
The FDA Approves Lumizyme for Late-Onset Pompe Disease
CAMBRIDGE, Mass. – Genzyme Corporation (Nasdaq: GENZ) announced today that the FDA has granted U.S. marketing approval for LumizymeTM (alglucosidase alfa), produced at the 4000 liter (L) bioreactor scale at its manufacturing facility in Geel, Belgium. Lumizyme is the...
Pompe Disease: The Real Story
To read a factual account of the true history of Pompe Disease, please visit Pompe Disease—The Real Story.
AMDA Press Release Regarding Extraordinary Measures
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 disease to help raise awareness of the condition. That fact sheet can be found...
ATAP Inclusion/Exclusion and List of Study Sites
This information was complied from the information provided on clinicaltrials.gov. To read, please download file by clicking here.
December 2009 Pompe Program Update
Genzyme would like to provide an update to the US Pompe community about the status of the Alglucosidase Alfa Temporary Access Program (ATAP) and the application for Lumizyme™ (alglucosidase alfa) approval in the United States. In a press release dated December 3,...
Influenza Vaccinations and Pompe Disease
Guidelines from Erasmus Medical Centre, Rotterdam, the Netherlands As a guideline we recommend that all patients with Pompe disease are vaccinated against influenza. This applies both to the seasonal influenza as well as for the 2009 flu pandemic (influenza virus...
Genzyme invites the Gaucher, Fabry, Pompe and MPS I communities to a Town Hall Meeting
Genzyme Manufacturing Update Genzyme invites all patients to participate in a forum to discuss recent FDA reports and media attention related to manufacturing operations in Allston, Massachusetts. Date: Monday, November 23, 2009 Time: 6:00 PM – 7:00 PM (EST) US Toll...
November 2009 Pompe Program Update from Genzyme
Genzyme would like to provide an update to the US Pompe community about the status of the application for Lumizyme™ (alglucosidase alfa) produced at the 2000 L scale in the United States. To read full Program Update, please click here.
Acid Maltase Deficiency Association
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