International Pompe Association

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At the International Pompe Association’s Annual General Meeting in Nottingham, the IPA Board and Members who were present discussed how to best raise awareness of Pompe for the 2018 International Pompe Day (April 15, 2018).

After a lot of discussion, the group decided that we want to take the opportunity to raise awareness for not just a day, but for a whole year. Therefore, the idea of creating a calendar was born.

Today, on International Pompe Day we put out a call to the International Pompe Community to help the IPA to create a calendar for 2019 that will keep Pompe in the minds and hearts of all recipients throughout the year. It will be a monthly calendar, with a photo/artwork and a thought-provoking statement or question for each month.

How you can participate

There are three ways that you can participate:

  1. Submit a question/thought to be considered for inclusion on one month of the calendar
    Is there a question or thought that is on your mind about Pompe? Something that you would like to share with the doctors, scientists, companies, and other patients? Something that you think should be on everyone’s mind? If so, please submit the question/thought and an explanation of why you think it is important.
  2. Submit a photo or picture of artwork to be considered for inclusion in the calendar
    Please include a description of the artwork–what it means to you, and what you hope to portray to the international Pompe community through the art work.
  3. Submit both a question/thought and artwork that goes with it

Please submit your contribution by e-mail to webmaster@worldpompe.org

The deadline for submissions is: Sunday 27th May 2018.

We look forward to seeing everyone’s submissions and to creating a calendar that shows the world that “Together We Are Strong.”

Flyer: 2019 Pompe Calendar (PDF, 970 KB)