Over the last 2 years, it is clear that 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.
To complete the survey would you please contact your local Pompe organisation who will provide you with a link to the survey. To make this as easy as possible, versions of the survey are available in a number of languages.
All Pompe patients over the age of 16 years old are welcome to complete the survey.
All information will be deidentified and the survey has been approved by the Erasmus MC ethics committee. Please see the Erasmus MC Patient Privacy Information https://www.erasmusmc.nl/en/patient-care/privacy
If there is not an IPA affiliate in your country or region, or you need assistance, please email firstname.lastname@example.org
Thank you for your help,
Chair, International Pompe Association.