EB Research Partnership Australia

EB Research Partnership Australia’s (EBRPA) mission is to accelerate treatments and improve quality of life for the 1,500 Australians living with Epidermolysis Bullosa (EB) – including approximately 350 in Victoria. Our vision is a world where EB is cured, and where the model we build to get there transforms outcomes for people living with rare disease everywhere.

EB is one of the most painful conditions known to medicine. Caused by a genetic fault present from birth, it leaves the skin as fragile as a butterfly’s wings – so delicate that the gentlest touch causes it to blister and tear. Those living with EB endure constant open wounds, relentless pain, and, in severe cases, a significantly elevated risk of aggressive skin cancer. There is no cure. And for most Australians with EB, the research and treatments that could change their lives remain out of reach.

EBRPA exists to close that gap. Rather than simply distributing funds, we invest strategically in the research most likely to reach patients, and reinvest every gain into the next breakthrough – ensuring each dollar works harder and goes further. As the Australian arm of a global movement, we connect local science to the world’s leading EB research.

This approach delivers results. We have helped fund two of the three approved EB treatments now in existence and grown the number of active EB clinical trials from two to over fifty globally. In April 2026, we helped make possible the first EB gene.

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