TOP NEWS
Texas Adds Pompe Disease to Newborn Screening Panel—A Historic Milestone Coinciding with the AMDA’s 30th Anniversary
Great news for the rare disease community—Texas has taken a big step by adding Pompe disease to its newborn screening panel! This major advancement in protecting the health of Texas infants also marks a meaningful moment for the Acid Maltase Deficiency Association...
OTHER NEWS
Registration now open for 2015 AMDA International Pompe Patient and Scientific Conference
We are excited to announce that Registration is now open for the 2015 AMDA International Pompe Patient and Scientific Conference! The Conference will be held in San Antonio, Texas from October 30-November 1, 2015. In order to assist with Conference planning, we ask...
Genzyme’s Pompe Community Program Update for International Pompe Day
Please click here to read the press release.
Pompe Program to Air on Lifetime’s Access Health on April 15, 2015
The AMDA is excited to announce that in collaboration with Genzyme Corporation, AMDA President and IPA Chair, Tiffany House, participated in a segment on Pompe Disease awareness for Access Health on Lifetime Television! This program will air on April 15th, 2015 in...
Pompe Disease to be Added to Recommended Newborn Screening Panel in the United States
The AMDA is very excited to announce that the U.S. Pompe Community is one step closer to having newborn screening become a reality for Pompe disease! On March 2, 2015, the Secretary of Health and Human Services, Sylvia Burwell, accepted the recommendation to add Pompe...
Date Set for 5th Annual PCMA of Texas’ Pull for Pompe!
The PCMA of Texas invites you to enjoy a day of family fun benefiting Acid Maltase Deficiency, also known as Pompe Disease. This event is designed for all ages and ability levels. It will be held at the National Shooting Complex in San Antonio, Texas. Please click...
Australian Pompe’s Association Welcomes Approval of Treatment for Young Australians with Pompe
Press Release by Australian Pompe Association (APA) 17th February 2015 The Australian Pompe’s Association (APA) welcomes the news that the Minister for Health Sussan Ley has approved treatment for young Australians with Pompe disease. As of the 1st February 2015, the...
Second Annual International Pompe Day!
April 15th, 2015 will mark the Second Annual International Pompe Day! Last year the Pompe Community worked together to raise awareness of Pompe Disease, and showed the world how Strong our Community can be. Please click here for a summary of the events and activities...
Update on Biomarin’s Pompe Clinical Program—January 2015
BioMarin are pausing further recruitment for their BMN-701 clinical trial and have provided this programme update: January 2015 BioMarin is pleased to update the Pompe patient community on the progress made in our programme to develop a treatment for people living...
2014 Helen Walker Research Grant Awarded
The fifth annual AMDA Research Grant (the 2014 Helen Walker Research Grant) was awarded to Dr. Giancarlo Parenti with the Federico II University in Naples, Italy for his Project: “Analysis of Circulating and Tissue Specific microRNAs in Pompe Disease.” Despite...
United States Pompe Community Update from Genzyme
Genzyme would like to share with you an important update regarding the recent United States (U.S.) Food and Drug Administration’s (FDA) approval of an expanded label for Lumizyme® (alglucosidase alfa) manufactured at the 4000L scale and its impact on Myozyme®...
Acid Maltase Deficiency Association
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THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA