EB Research Partnership is dedicated to finding a cure, and finding it quickly.
What is Epidermolysis Bullosa (EB)?
Imagine your skin as delicate as butterfly wings. For someone with Epidermolysis Bullosa (EB), the "glue" holding skin layers together is missing. The slightest touch causes painful blisters and wounds.
A simple hug can tear skin. Removing a bandage becomes traumatic. Parents of "butterfly children" describe the heartbreak of not being able to hold their newborn without causing harm.
Daily life requires hours of careful wound care, with constant pain and infection risks. Even eating can be agonizing due to internal blisters.
Despite these challenges, people with EB show remarkable courage—finding joy while living with extraordinary fragility.
Join the Plunge for EB
Please join us as we make waves for EB. Whether you are plunging or cheering, all are welcome at plunges across Australia!
Our Story
At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the progress being made towards achieving that goal and more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
2
FDA Approved EB Treatments
160
Projects
Funded
Funded
20X
More Active EB Clinical Trials
70M
Dollars Raised for Research
Real People, Real Stories
Victoria: Junctional
Nina & Otto: Simplex
John: Dystrophic