9th Annual Global Event to Highlight Strength of Patient Community

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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The 9th annual International Pompe Day will be celebrated on April 15 to raise global awareness of Pompe disease and highlight the strength and resilience of the patient community.

The event, with the slogan “Together We are Strong,” is organized by the International Pompe Association (IPA) — a federation of patient groups.

This year’s theme is “International Pompe Voices.”

“[International Pompe Day] is a day to bring the global Pompe community together in a great show of strength,” the Pompe Support Network said about last year’s event. “It is an opportunity to see how other people are living with Pompe and understand some of their challenges. It is also a day to raise awareness of this incredibly rare condition.”

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Pompe disease, also known as acid maltase deficiency, is a rare genetic disorder characterized by the abnormal buildup in cells of glycogen — a complex sugar — leading to disrupted organ function, especially in the heart and other muscles. The disease affects an estimated 5,000 to 10,000 people worldwide.

The IPA hopes to increase disease awareness through the annual event and invites patients and caregivers to record a short video demonstrating “how strength and resilience is gained through friendship.”

Participants are asked to record a short conversation (about five minutes or less) in their native language with a friend, family member, or someone else of their choosing about their life with Pompe. They are encouraged to choose a topic centered around how they, and/or a Pompe patient they care for, grow stronger by interacting with others.

All recordings will be uploaded to the IPA YouTube channel and will be available on its website on April 15.

Recordings, either with or without video, can be made on mobile devices or apps like Zoom and uploaded to one of several platforms or emailed directly to [email protected] with a short description of the conversation. Detailed instructions can be found on the IPA’s website about the event.

Supporters can also purchase International Pompe Day merchandise, including keychains, mugs, T-shirts, and more. The shop is hosted by the Acid Maltase Deficiency Association and proceeds will go toward raising awareness of Pompe disease.

Organizations wishing to show support can submit their names and/or logos to [email protected] for publication on the event’s website.

The IPA was officially formed more than 20 years ago by patients with a shared goal of bringing together worldwide positive energy to help Pompe patients and their families improve the quality of their lives, the association states on its website.

Posts from last year’s “Pompe Around the World” themed event can be viewed on the International Pompe Day blog.