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:
- Upload a photo to the International Pompe Day website. (expired link)
- 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.
Hope for the Future!
April 15, 2020 will be our 7th Annual International Pompe Day!
The IPA believes that raising awareness of Pompe Disease is key, and this year’s theme has been selected as “Hope for the Future.”
It is an exciting time for the Pompe Community worldwide with new studies and treatments on the horizon, and Hope is what drives the patient community, and what inspires the medical\scientific community, and industry, to keep working.
The International Pompe Association is calling on all members of the global Pompe community to express their Hope for the Future.
In order to do so, the IPA has created a blog that individuals can post to.
The IPA’s hope with the Blog this year is to encourage the entire Pompe Community to participate and share their individual “Hope for the Future.” What do we, as patients hope for? What do our families hope for? What do our doctors hope for? What do the scientists working on Pompe hope for? What does industry hope for?
How You can Participate:
- Take a photo (of you or loved one’s) wearing, or displaying, something GREEN (the color of Hope).
- 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.
By submitting a contribution, you agree that it is published on our 2020 International Pompe Day blog: ipompeday.blogspot.com
The Blog will go live on International Pompe Day—April 15, 2020. 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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Acid Maltase Deficiency Association
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The Association for Glycogen Storage Disease UK
Association Shifa des Maladies NeuroMusculaires
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Association Canadienne de Pompe
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Genzyme Corporation, a Sanofi company
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National Organization for Rare Disorders (NORD)
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Rare Diseases South Africa
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