Welcome to the International Pompe Association (IPA)
At the International Pompe Association’s Annual General Meeting in Nottingham, the IPA Board and Members who were present discussed how to best raise awareness of Pompe for the 2018 International Pompe Day (April 15, 2018).
After a lot of discussion, the group decided that we want to take the opportunity to raise awareness for not just a day, but for a whole year. Therefore, the idea of creating a calendar was born.
Today, on International Pompe Day we put out a call to the International Pompe Community to help the IPA to create a calendar for 2019 that will keep Pompe in the minds and hearts of all recipients throughout the year. It will be a monthly calendar, with a photo/artwork and a thought-provoking statement or question for each month.
How you can participate
There are three ways that you can participate:
- Submit a question/thought to be considered for inclusion on one month of the calendar
Is there a question or thought that is on your mind about Pompe? Something that you would like to share with the doctors, scientists, companies, and other patients? Something that you think should be on everyone’s mind? If so, please submit the question/thought and an explanation of why you think it is important.
- Submit a photo or picture of artwork to be considered for inclusion in the calendar
Please include a description of the artwork–what it means to you, and what you hope to portray to the international Pompe community through the art work.
- Submit both a question/thought and artwork that goes with it
Please submit your contribution by e-mail to firstname.lastname@example.org
The deadline for submissions is: Sunday 27th May 2018.
We look forward to seeing everyone’s submissions and to creating a calendar that shows the world that “Together We Are Strong.”
Flyer: 2019 Pompe Calendar (PDF, 970 KB)
The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fifth Annual International Pompe Day!
The IPA is very excited to announce the winners in each category:
First Place: Abdurrahman Amerat
The sun gives us light, energy and it grows food to make everyone strong. It also makes the universe powerful.
Dear Pompe Patient Community Leaders,
At Audentes Therapeutics, we are focused on developing and commercializing gene therapy products for patients living with serious, life-threatening rare diseases. As with many rare conditions, there is limited published information available about the humanistic impact, or burden, that the condition has on the individuals and families living with it every day. While there is published literature discussing the clinical and humanistic burden of Pompe disease, there are still gaps in fully understanding certain aspects of the humanistic burden, particularly for infantile-onset Pompe disease (IOPD).
We believe that understanding the perspective of those living with Pompe disease and how it affects them is important to developing our clinical plans for new therapies to treat Pompe disease. Therefore, we recently partnered with medical experts to conduct and publish a comprehensive review, entitled, “The Humanistic Burden of Pompe Disease: Are There Still Unmet Needs? A Systematic Review.” This article was published in the journal called BMC Neurology and can be found here.