International Survey on Pompe Disease and Covid-19
September 19, 2022
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 one-time international survey of
Pompe patients. The purpose of this survey is to look at both the effects of the pandemic on the life-style
of Pompe patients, as well as the effects of infections with COVID-19. We believe that it is critical to
gather this data so that we can properly and timely document these effects and we would like to ask your
help.
This study is open to all Pompe Patients over the age of 16. If you are interested in participating in the
Survey and are in the US, please contact us at info@amda-pompe.org
OTHER NEWS
International Survey on Pompe Disease and Covid-19
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
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 Pompe...
Astellas Gene Therapies Press Release – Clinical Trial Update
"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 gene therapy candidate")...
Voice of the Patient Report for the Pompe PFDD is Released!
The AMDA is excited to report that the final Voice of the Patient Report for the Pompe Patient-Focused Drug Development meeting has been released. To view the report, please CLICK HERE!
Aro Biotherapeutics to Present New Preclinical Data
Aro Biotherapeutics to Present New Preclinical Data Highlighting the Potential of Centyrin-siRNA Conjugates for the Treatment of Pompe Disease. To read the article, please click here.
2022 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that the 11th Annual PCMA’s Pull for Pompe will take place on Saturday, April 30, 2022 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...
2021 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
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 2021 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
Re-Scheduled–Friday, Oct 8, 2021: AMDA and Spark Webinar: Understanding Gene Therapy Research and the Potential Applications for Late Onset Pompe Disease
Hi All, We are excited to announce that the webinar is on for Friday, October, 8, 2021 at 1 PM CST. If you have already registered, you don't need to do anything. If you have NOT registered yet, it's not too late! Please click here to register. And, don't forget, we...
FDA approves Sanofi’s Nexviazyme® (avalglucosidase alfa-ngpt) for Late-Onset Pompe
PARIS – August 6, 2021 - The U.S. Food and Drug Administration (FDA) has approved Nexviazyme® (avalglucosidase alfa-ngpt) for the treatment of patients one year of age and older with late-onset Pompe disease, a progressive and debilitating muscle disorder that impairs...
February 2021 Amicus’ AT-GAA Shows Clinically Meaningful & Significant Improvements in Both Musculoskeletal and Respiratory Measures
Amicus’ AT-GAA Shows Clinically Meaningful & Significant Improvements in Both Musculoskeletal and Respiratory Measures in Late-Onset Pompe Disease Compared to Standard of Care in Pivotal Phase 3 PROPEL Study. Amicus Therapeutics, Inc. Download file Download...
Acid Maltase Deficiency Association
If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
(210) 494-6144
info@amda-pompe.org
AMDA
PO Box 700248
San Antonio, Texas 78270 USA