Welcome to the International Pompe Association (IPA)
April 15, 2019
Today is our 6th 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 believes that raising awareness about Pompe Disease is key, and for 2019 the theme that has been selected is Moving On with Pompe: 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, in the hope of inspiring others.
Inspiring stories from our international community have been collected in a dedicated blog that the IPA has specifically created: https://ipd2019.blogspot.com
Please read and share these stories, so we can inspire others and show the world how strong our Community is!
Thanks to all that have contributed with their story, and happy International Pompe Day!
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 firstname.lastname@example.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.
There are multiple clinical trials that are currently underway for Pompe disease. Because there are so many different trials, which is unique for a rare disease like Pompe, it is important to understand the clinical trial process, the trials phases, and other basic information.
Please find in the attachment a short overview of clinical trials in general.
The International Pompe Association
(courtesy of the AMDA - Acid Maltase Deficiency Association)
- Overview of Clinical Trials (PDF, 320.97 kB)