The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day is "Together We Are Strong". The IPA encourages everyone to become involved to show how STRONG our Community is – both in numbers and in passion! There are several ways that you can participate:
- Visit our International Pompe Day blog: https://ipompeday.blogspot.com/
- Participate in the International Pompe Day Activities!
- Become a Supporter! Organizations are invited and encouraged to become Supporters of International Pompe Day by submitting their logo (or name) for publication on the International Pompe Day website. Please email your logo to InternationalPompeDay@worldpompe.org
- Buy Your Official International Pompe Day Merchandise! Merchandise is available at the International Pompe Day Shop on Cafe Press. The Shop is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe Disease Awareness.
April 15, 2021 will be our 8th Annual International Pompe Day!
The IPA believes that raising awareness of Pompe Disease is key, and this year’s theme has been selected as “Pompe Around the World.”
How You can Participate:
- Our goal with Pompe Around the World is to show what it is like to live, cope, or how you are connected with Pompe all over the world — that no matter where we live we are all connected. Please take a picture that represents where you live and share a short statement about your life.
- Send an email to ipd2021@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 share your short statement;
- 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.
By submitting a contribution, you agree that it is published on our 2021 International Pompe Day blog: ipompeday.blogspot.com
The Blog will go live on International Pompe Day—April 15, 2021. However, we will post a list of submissions, which will be periodically updated, so that you can see if your submission has been received.
Thank you!
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IPD Supporters
International Pompe Association
Acid Maltase Deficiency Association
Amicus Therapeutics
The Association for Glycogen Storage Disease UK
Association Shifa des Maladies NeuroMusculaires
Australian Pompe's Association
Canadian Association of Pompe
Association Canadienne de Pompe
baebies
Genzyme Corporation, a Sanofi company
Gripjoy
Hope Travels
Hrvatski savez za rijetke bolesti
Проект Ай-Мио (I-MIO Project)
Lysosomal Diseases New Zealand
National Organization for Rare Disorders (NORD)
New Zealand Pompe Network
Pompe Alliance
Pompe Deutschland e.V.
Rare Diseases South Africa
Selbsthilfegruppe Glykogenose Deutschland
Vereniging Spierziekten Nederland