Update on Clinical Results in Children and Adults with Pompe Disease

Highlights of the Late-Onset Treatment Study (LOTS) – a compilation for Patients New information regarding the use of...
Author: Marsha A. Zimmerman
Archive
July 7, 2011

Register for the 2011 AMDA/IPA Pompe Patient and Scientific Conference

Registration for the 2011 AMDA/IPA Pompe Patient and Scientific Conference is now open! The Conference will be held...
Author: Tiffany House
Archive
July 6, 2011

Fighting to get reimbursement for treatment in Australia

To fight for reimbursement of enzyme replacement therapy in Australia: many television-and radio programs on this topic have...
Author: Press
Archive
June 10, 2011

Untreated adults with Pompe Disease have a higher mortality than the general population

A new scientific paper on “Survival and associated factors in 268 adults with Pompe Disease prior to treatment...
Author: IPA
Archive
June 6, 2011

AMDA Webinar

June 6, 2011 | 12:00pm (ET); 11:00am (CT); 10:00am (MT); 9:00am (PT) Respiratory muscle strength training in Pompe...
Author: Marsha Zimmerman
Archive
June 6, 2011

II Congresso Internacional de Glucogenosis / II International Glucogenosis Conference

June 3-5, 2011 in Burgos, Spain II Congresso Internacional de Glucogenosis2nd International Glucogenosis Conference This is the 2nd...
Author: Webmaster
Archive
June 5, 2011

Zack’s 100th Infusion Celebration

By Sabrina Low-DuMond Zack DuMond (15) celebrated his 100th enzyme replacement therapy infusion on 5/25/11 at CHOC’s Pediatric...
Author: IPA
Archive
June 1, 2011

Swiss National Health System Should Pay for Myozyme

Next step in the fight for reimbursement of enzyme replacement therapy in Switzerland: A Swiss newspaper reports that...
Author: Press
Archive
May 30, 2011

VSN Pompe Disease Information Day

May 28, 2011 in Lunteren, the Netherlands                                                 VSN Pompe Disease Information Day The Congenital and Metabolic Muscle Diseases...
Author: Webmaster
Archive
May 27, 2011

Report: Pompe Patient & Family Meeting in Seattle, Washington

A personal report by Hillary Lerch Gibson Saturday, May 21, 2011 there was a Pompe Patient & Family...
Author: IPA
Archive
May 26, 2011
1 … 23 24 25 26 27 … 38