Welcome to the International Pompe Association (IPA)
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 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, 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.
The Australian Pompe Association, a member of IPA, recently authored an article titled “Is Newborn Screening the Ultimate Strategy to Reduce Diagnostic Delays in Pompe Disease? The Parent and Patient Perspective” which was accepted for publication.
The article is published in the International Journal of Neonatal Screening Special edition on Pompe disease, and can be found here.
The first meeting of the IPA Community Advisory Board (CAB) was recently held in San Antonio Texas on October 28, 2019.
The IPA established its Community Advisory Board (CAB) for Pompe disease in 2019 and consists of 24 individuals from the Pompe patient community, including patients, family members of patients, and patient organization leaders from different countries and continents around the world, representing the range of varieties of Pompe disease, from infantile to late-onset Pompe disease. During the meeting, the CAB members offered their experience and expertise to sponsors of clinical research, on overall program development, single clinical trials, hopes for future therapies, and other aspects beyond the research program, with the ultimate goal of ensuring that clinical studies are designed to consider the real needs of patients.
The meeting was moderated by James Valentine, an independent third-party moderator, and was extremely productive, setting a high standard for future CAB meetings.
- Summary of Key-Takeaways (PDF, 197 KB)