International Pompe Day: 15th April 2020

1: Global Treasure Hunt

The Pompe Support Network values highly the global network of Pompe associations, patients, families and professionals. We have created a small Treasure Hunt to highlight a few treasures hidden in the websites of 10 IPA member countries. There is no prize other than the satisfaction of finding the correct information and the understanding of how other Pompe communities are supporting each other.

To join the treasure hunt, follow this link:

Pompe Support Network Treasure Hunt

HINT: To find the national websites containing the hidden treasures, you will find the IPA list of members and contacts helpful.

For our later analysis and to send you your result, will be asked to provide you name, email address and country of residence; we will keep your identity totally anonymised in any reports generated as a result of the Treasure Hunt.

2: International Pompe Association Blog

Below is an extract from the IPA website

The IPA’s hope with their Blog this year is to encourage the global Pompe Community to participate and share their individual “Hope for the Future.”

How You can Participate:

1. Take a photo (of you or loved one’s) wearing, or displaying, something GREEN (the color of Hope).
2. Send an email to ipd2020@worldpompe.org

• the subject of your email will be the title of your post;
• the body of the email will be the post itself, where you can express your idea of what your Hope for the Future is;
• to include your photo in your post, you can simply attach the image to your email (total size max. 10 MB).
• Please include your name, country and age in the email, so we can show the world how strong our Community is.