International Pompe Association

IPD Logo

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:

IPD Logo

Moving On with Pompe!

April 15, 2019 will be our 6th International Pompe Day!

The IPA believes that raising awareness about Pompe Disease is key, and for this year the theme that has been selected is “Moving On with Pompe”: This is meant to be an encouraging and positive theme to show how it is possible to continue living a fulfilling life after diagnosis and despite the challenges of living with Pompe disease.

The International Pompe Association is calling on our global Pompe community to show how every one of us is Moving On with Pompe in the hope of inspiring others.

In order to collect these stories, the IPA has created a blog that individuals can post to.

How You can Participate:

You can share your photos and story, and inspire others on how you are Moving On with Pompe, by sending an email to ipd2019@worldpompe.org.

  • the subject of your email will be the title of your post;
  • the body of the email will be the post itself;
  • to include a photo in your post, you can simply attach an 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 2019 International Pompe Day blog: https://ipd2019.blogspot.com/

Your submissions are not published before International Pompe Day on April 15, 2019, but we will post a list of submissions which is updated from time to time.

Thank you!

IPD Supporters

Acid Maltase Deficiency Association (USA)
Acid Maltase Deficiency Association

 

Amicus Therapeutics
Amicus Therapeutics

 

The Association for Glycogen Storage Disease UK
The Association for Glycogen Storage Disease UK

 

Association Shifa des Maladies NeuroMusculaires (Algeria)
Association Shifa des Maladies NeuroMusculaires

 

Australian Pompe's Association
Australian Pompe's Association

 

Canadian Association of Pompe - Association Canadienne de Pompe
Canadian Association of Pompe
Association Canadienne de Pompe

 

baebies
baebies

 

Genzyme Corporation, a Sanofi company (USA)
Genzyme Corporation, a Sanofi company

 

Gripjoy (USA)
Gripjoy

 

Hrvatski savez za rijetke bolesti (Croatia)
Hrvatski savez za rijetke bolesti

 

Проект Ай-Мио (I-MIO Project)
Проект Ай-Мио (I-MIO Project)

 

Lysosomal Diseases New Zealand
Lysosomal Diseases New Zealand

 

National Organization for Rare Disorders (NORD)
National Organization for Rare Disorders (NORD)

 

New Zealand Pompe Network
New Zealand Pompe Network

 

Pompe Deutschland e.V.
Pompe Deutschland e.V.

 

Rare Diseases South Africa
Rare Diseases South Africa

 

Selbsthilfegruppe Glykogenose Deutschland (Germany)
Selbsthilfegruppe Glykogenose Deutschland

 

Vereniging Spierziekten Nederland (The Netherlands)
Vereniging Spierziekten Nederland