Events

Everything is so colorful here

What a wonderful weekend! On the second weekend in August, members of Pompe Germany met in Bingen at the river Rhine. It was a complete success. Saturday began with a special painting activity under the motto “What does Pompe mean for my life?” Eleven participants gave free rein to their creativity and created pictures that...

Author: IPA

Events

August 24, 2025

International Pompe Day: 15 April 2025 – Run, Walk or Roll

Run, Walk or Roll for Pompe disease on International Pompe Day, April 15, 2025!

Author: IPA

Events

April 1, 2025

Webinar: The Pompe Survey: Past Insights and Future Goals

The AMDA is hosting a webinar, Tuesday, March 25, 2025 at 11 AM CT / 12 PM ET with an update on the IPA/Erasmus MC Pompe Survey presented by Lauren Dobischok and Michelle Kruijshaar from Erasmus Medical Center, in Rotterdam, the Netherlands. With second-generation ERT entering the market and other novel therapies on the horizon, insights from patients’ perspectives are...

Author: IPA

Events

March 13, 2025

International Pompe Day: 15 April 2024 – Every Move Counts

Videos from the Pompe community illustrating how strength and resilience are gained through friendship.

Author: IPA

Rare Disease Day: 29 February 2024

The Rare Disease Day is held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Read more on Wikipedia

Author: IPA

International Pompe Day: 15 April 2023

The IPA is one again excited to join the international Pompe community to celebrate International Pompe Day on April 15th! 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”.

Author: IPA