EB Research Partnership is dedicated to finding a cure, and finding it quickly.

What is Epidermolysis Bullosa (EB)?

Illustration of a pink butterfly with open wings, featuring intricate patterns.

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.

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.

3

FDA Approved EB Treatments

160

Projects
Funded

25X

More Active EB Clinical Trials

70M

Dollars Raised for Research

Real People, Real Stories

Smiling child in blue shirt and bandages on arms, sitting indoors by a window-lined wall with a glass ceiling.

Jacob: Dystrophic

Baby crawling with bandaged hands and spots on face, wearing red dress and white shirt, on gray carpet.

Victoria: Junctional

A smiling woman and a young boy hugging, seated on a couch in a cozy setting.

Nina & Otto: Simplex

A person with bandaged hands in a blue hoodie leaning on a motorcycle in a garage.

John: Dystrophic