International Pompe Association
For International Pompe Day the International Pompe Association are asking people in the global Pompe community to record a short conversation by video, illustrating how strength and resilience is gained through friendship. They ask you to record a conversation with, for example, a friend, family member or someone within the Pompe community and 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.
- You’re encouraged to record the conversation in your native language. They 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 on the IPA YouTube channel and will be available on their website on International Pompe Day.
Instructions for sending IPD 2022 video files
Follow one of the five following methods to send 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,
OR
Upload your video to YouTube, Vimeo, or another video platform,
OR
Upload your video file to Dropbox, Google Drive, Microsoft OneDrive, or another cloud storage system,
OR
Send the file using WeTransfer, Filemail or another large file transfer system,
OR
Request a link from IPA to our shared drive to upload your video file (Use email address below).
Email your video files or links to ipd2022submissions@worldpompe.org
When you send the file, or a link, please include a short description of the conversation, or send it in a separate email.