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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
Events
April 12, 2024
Cover-webinar

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
Rare Disease Day 2023

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
Archive
March 1, 2023
Cover - International Pompe Day 2023

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
Archive
January 1, 2023