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
