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

Covid Survey info

 

OTHER NEWS

10th Annual PCMA Pull for Pompe!

The AMDA is excited to announce that the 10th Annual PCMA’s Pull for Pompe will take place on Saturday, April 4, 2020 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...

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Audentes Pompe Program Update

Audentes has released a Pompe Program Update. It includes information regarding FORTIS, their clinical trial for gene therapy for Pompe. To read the Pompe Program Update, please click here.

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Patient Focused Drug Development Meeting—UPDATE

As everyone knows, due to the ongoing COVID-19 pandemic, the Patient-Focused Drug Development Meeting (PFDD) that was originally scheduled for March 09, 2020, was postponed. It has been moved to a Virtual Meeting that will take place Monday, July 13, 2020, from...

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2020 PCMA Pull For Pompe!—Cancelled

Update: July 8, 2020 It is with great sadness and disappointment that we hereby announce the cancellation of the 2020 Pull For Pompe Shoot due to the on-going COVID-19 pandemic. When we initially postponed the Shoot to August 15, we had high hopes that the virus would...

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AMDA Q and A with Dr. Priya Kishnani on COVID-19 and Pompe

With all of the questions and uncertainty surrounding the ongoing COVID-19 pandemic, the AMDA worked with Dr. Priya Kishnani and her group at Duke University on the following Question and Answer Fact Sheet. We hope that the Pompe Community will find the information...

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10th Annual PCMA Pull for Pompe!

Announcement Regarding COVID-19 and the Pull for Pompe (03/18/2020): After careful consideration, and long discussions among the organizers; the 2020 PCMA Pull for Pompe has been postponed until Saturday, August 15, 2020. The Team of volunteers for The Pull For Pompe...

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 Acid Maltase Deficiency Association

GET INVOLVED

Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.

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