Advancing EB Research Together
The EB Community Advisory Board brings the voices of the EB community into every stage of research and therapy development.
Nothing about us without us.
Who We Are
People living with epidermolysis bullosa, parents, caregivers, and advocates — united by lived experience.
What We Do
We advise researchers and companies on everything from basic research to patient-centered study design, unmet needs, and access — as an independent, standing board built on the established GlobalCAB model.
Why It Matters
Lived experience provides insights that scientific data alone cannot — making research more relevant, studies more feasible, and treatments more meaningful to the people who need them.
The EB CAB operates independently of industry and patient organisations, so our advice reflects one thing only: the needs of people living with EB.
Stay Connected
Want to follow our work or get involved? Sign up and we'll keep you posted as the EB CAB develops — and feel free to reach out anytime at info@eb-cab.org.