NEWS Archives

CALL to participate in IPA Project Every Move Counts

Aug 3, 2023 | NEWS, ARCHIVES

At International Pompe Day the International Pompe Association kicked off the Every Move Counts project. This project focuses on raising awareness of the importance of movement. We all have different abilities and levels of disability, but the important thing to...

2024 Acid Maltase Deficiency Association (AMDA)/International Pompe Association (IPA) Conference date has been set!

Aug 2, 2023 | NEWS, ARCHIVES

Dear Pompe Warriors and Patient Community, We are excited to announce the upcoming 2024 Acid Maltase Deficiency Associate – International Pompe Association (AMDA-IPA) Conference, a momentous event dedicated to advancing knowledge, support, and advocacy for...

Rare Artist Contest is now Open for Submissions

Aug 2, 2023 | NEWS, ARCHIVES

Enter July 23rd – August 31st at RareArtist.org The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art. Now in year 13, the Rare Artist Annual Contest is focused on...

Amicus Therapeutics Announces Approval and Launch of New Pompe Disease Therapy in the European Union

Jul 7, 2023 | NEWS, ARCHIVES

PHILADELPHIA, June 27, 2023 (GLOBE NEWSWIRE) — Amicus Therapeutics (Nasdaq: FOLD), a patient-dedicated global biotechnology company focused on developing and commercializing novel medicines for rare diseases, today announced that the European Commission (EC) has...

2023 PCMA Pull for Pompe Fundraiser

Feb 8, 2023 | NEWS, ARCHIVES

The AMDA is excited to announce that the 12th Annual PCMA’s Pull for Pompe will take place on Saturday, April 29, 2023 at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all ages and ability levels. Please...

2022 Helen Walker Research Grant For Pompe Disease Now Accepting Appliations

Jan 13, 2023 | NEWS

The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by the 2022 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of...

An Open Letter to the Pompe Community

Nov 1, 2022 | NEWS

On October 28, Amicus Therapeutics issued a press release with an update on the progress of our Pompe program as we received information from the US Food & Drug Administration (FDA) on the regulatory status of our next-generation therapy for the treatment of...

International Survey on Pompe Disease and Covid-19

Sep 19, 2022 | NEWS

Over the last 2 years the COVID-19 pandemic has had wide reaching effects on people all over the world. To better understand the impact of the Covid 19 Pandemic on the worldwide Pompe community, the International Pompe Association and the Erasmus MC are undertaking a...

2021 Helen Walker Grant for Pompe Disease Winner Announcement

Sep 6, 2022 | NEWS

The AMDA is excited to announce that the 2021 Helen Walker Grant for Pompe Disease was awarded to Dr. Peter Meinke and Dr. Benedikt Schoser for their Project entitled: “Generation of a platform for comparative testing of new treatments for people living with...

Astellas Gene Therapies Press Release – Clinical Trial Update

Jun 28, 2022 | NEWS

“On June 26, 2022, Astellas Pharma, Inc. (“Astellas”) issued a press release announcing that the U.S. Food and Drug Administration (FDA) has placed a clinical hold on the FORTIS Phase 1/2 clinical trial evaluating AT845 (“the investigational...