International Pompe Day 15 April 2022

Category: Archive
March 21, 2022

International Pompe Voices


For International Pompe Day (IPD) we are asking people in the global Pompe community to record a short conversation by video, illustrating how strength and resilience is gained through friendship. We 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 sub-titles) and translate into other languages.
  • Please try to keep the conversation to about 5 minutes or less.
  • All recordings will be published in the IPD 2022 playlist on the IPA YouTube channel and on the International Pompe Day blog.

*Please note: We 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.

Instructions for sending IPD 2022 video files:

Please follow one of the five following methods to send us your video file, or a link to the file.

Send small video files as email attachment – your email system may not allow files bigger than 10 or 20 MB,


Upload your video to YouTube, Vimeo, or another video platform,


Upload your video file to Dropbox, Google Drive, Microsoft OneDrive, or another cloud storage system,


Send the file using WeTransfer, Filemail or another large file transfer system,


Request a link from us to our shared drive to upload your video file (Use email address below).

Email your video files or links to

When you send the file, or a link, please include a short description of the conversation, or send it in a separate email.

Using Zoom to record a conversation:

This is our suggested method to follow (a free Zoom account can host the meeting):

  1. Arrange a Zoom meeting with someone;
  2. Join the meeting together with each person: a. unmuted; b. video on or off (your preference);
  3. Press the record button on the control panel when you are ready;
  4. Stop recording when you have finished your conversation (try to keep the recording to less than 5 minutes);
  5. End the Zoom call;
  6. Zoom should, after processing, show you the video file location: the Zoom App will also show your Recordings under ‘Meetings’ in the top menu, or you can also find the recording on your Zoom Dashboard (in a browser window);
  7. Please send the recorded video file (e.g., zoom_0.mp4) as instructed above.

If you require further help or clarification, please contact us at

Thank you, and we look forward to hearing your conversation!

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