Living with EB is something a lot of people have never heard of. That is why documentaries and films are so powerful. They help people see, feel and understand the reality of EB — the strength of those living with it, the love of their families, and the urgent need for better treatments and care.
Over the years, several powerful films have helped shine a light on EB. These stories have brought global attention to the condition and helped raise awareness, compassion and support for the EB community.
Awareness is one of the most powerful tools we have in the fight against EB. When people understand EB, they care. And when they care, change becomes possible.
Films like these help:
Every person who watches and shares these stories helps bring us closer to a future where EB can be treated — and one day cured.
The Slightest Touch tells the deeply human story of Emma Fogarty and the everyday challenges she faces. From pain management and medical care to resilience and determination, the documentary brings viewers close to the reality of life with this rare condition.
The film was born from a promise between Emma and Colin Farrell — and from a shared commitment with the wider Debra community to keep pushing for hope, progress and research for people living with EB.
While it follows the story of Emma’s extraordinary marathon journey, at its heart the film is about something even more profound: reaching her 40th birthday, an age she was once told she would never see.
Trailer will be available soon.
A Matter of Time shines a light on the daily reality of living with EB and the urgent race to find effective treatments. Through the voices of people living with EB, their families and the experts working to support them, the film captures both the immense challenges of the condition and the extraordinary resilience of the EB community.
The documentary also features the support of Eddie Vedder, whose connection to the EB community has helped bring international attention to the condition and the urgent need for research.
At its heart, the film is about hope. It highlights the global effort to accelerate treatments and improve lives, reminding us that for those living with EB, progress in research and care truly is a matter of time.
The Boy Whose Skin Fell Off is one of the most well-known documentaries about EB. The film follows the life of Jonny Kennedy, a young man living with EB who used humour, honesty and bravery to raise awareness about the condition.
Jonny’s story touched millions of people and helped bring global attention to EB and the urgent need for research and support.
His legacy continues to inspire the EB community around the world.
