The Debra International Youth Council is a group of young people from across the global EB community who are coming together to shape the future — for themselves, and for those who will come after them.
It is led by young people living with EB, or closely connected to it, who want to use their voice, their experience, and their perspective to make a difference.
The Debra International Youth Council exists to be a place where people can feel represented, valued, planned for, considered and seen. With hundreds of members globally, it’s a safe and supportive platform. And its online gatherings are always eye-opening, as people with very different experiences of EB learn from and support each other.
It creates a space where young people can:
Most importantly, it ensures that young people are not just part of the conversation — they are helping lead it.
The Youth Council started as a small initiative for 18–35 year olds, because young people saw that the teenage years can be the most vulnerable. But almost immediately, people reached out from every age, saying, “I wish this existed when I was younger, I want to join!” So now we have groups for under 18s, 18–35s, and even people over 35. They have members from all over the world. Anyone can join. This is by the community, for the community.
Members
We are proud to support and promote the Youth Council. We are actively working to encourage more young people in Ireland to join, share the Council’s work with our community and supporters and amplify their voices through our channels and campaigns.
If you are a young person living with EB, or closely connected to someone who is, the Youth Council could be a place for you. It’s a chance to meet others like you, share your story if you want to, and be part of something that is creating real change.
We know that taking that first step can feel like a big one. But you won’t be doing it alone. Find out more about the Debra International Youth Council and how to get involved.
