Call of interest: Global DMD Adult Group

The Global DMD Adult Group, initiated by adults with Duchenne Muscular Dystrophy (DMD), aims to connect and empower people living with DMD and BMD. The goal is to become a platform for sharing stories, discussing challenges, while raising global awareness. Currently it is opening a call of interest to join the working group.

Last World Duchenne Awareness Day, the Global DMD Adult Group officially launched, uniting (young) adults living with DMD and BMD across the globe. On this day, acting chair Frank van Ieperen shared a video campaign, inviting adults with DMD and BMD to submit clips describing how they raise awareness in their countries. The video collected many global responses, providing insight into the advocacy efforts and lived experiences of adults with DMD and BMD. It is a powerful step towards building a global group for adults living with DMD and BMD.

 

 

Global DMD Adult Group

In the coming months, the group hopes to expand these discussions, focusing on issues like navigating life’s milestones differently, especially as adults with DMD and BMD face unique challenges in adulthood. In collaboration with the World Duchenne Organization, the group intends to explore themes such as independence, relationships, and navigating life transitions.

Currently, the group is inviting more adults with DMD and BMD to join this new network. Those interested can register by clicking on the button below, completing the form, adding their voices to a collective effort for advocacy and awareness.

 

Register interest to join Global DMD Adult Group

 

Registration is possible until Wednesday January 15. After that, the group will start hosting meetings to define key topics for support and advocacy efforts for adults with DMD and BMD.

For questions, please contact Frank van Ieperen.