International Pompe Voices

International Pompe Voices

- International Pompe Day 15th April 2022

Posted On: 23/03/2022

For International Pompe Day, the IPA are asking people in the global Pompe community to record a short conversation by video, illustrating how strength and resilience is gained through friendship.

International Pompe Day 2022

We are sharing the message to ask you to record a conversation with, for example, a friend, family member or someone within the Pompe community. Talk about your life with Pompe, and how interacting with others makes you, or your child, a stronger person. The subject of your conversation can be anything you like:

- You can make the recording on a mobile phone or using an App such as Zoom; you can record your conversation with cameras switched on or off, whichever you prefer.

- We would encourage you to record the conversation in your native language. We will then use YouTube* to transcribe it (create subtitles) and translate into other languages.

- Please try to keep the conversation to about 5 minutes or less.

- All recordings will be published on the IPA YouTube channel and will be available on our website on International Pompe Day.

*Please note: The IPA cannot accept Audio files because they cannot be easily published on YouTube, but you may like to send a video recording that does not show the people speaking.

Please email your video files or links to

For full instructions on how best to send your message please click here: International Pompe Day 2022

International Pompe Voices - - International Pompe Day 15th April 2022