TBX4 Family Film – A RAREly Told Stories Film

In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, on how to tell your rare disease story in video. We were so pleased with all the excellent short documentaries that resulted from this session. Three of the films will be screening at our RARE Advocacy Summit in Kansas City this September. Here’s a look at a film on TBX4.

A scene from the TBX4 Family Film

“We decided to make a video about TBX4 syndrome in hopes to spread awareness and help others understand more about what it is like to battle TBX4 Syndrome. It turned out to be a lot more work than we anticipated but it was worth every second! We have received so much positive feedback from families and medical teams about how impactful this short video was for them. We hope that this video will continue to have this same impact and be a motivator for participation in our battle for a cure.”

– LáRae Hacker