WELCOME TO EB RESEARCH PARTNERSHIP AUSTRALIA

ABOUT

WELCOME TO EB RESEARCH PARTNERSHIP AUSTRALIA

Epidermolysis Bullosa (EB) attacks the body’s largest organ — skin — and not just the skin we see but also the connective tissue and organs inside of us. It results in wounds that never heal, disfigurement, blisters, bleeding, and ever-present pain. It is lethal for many. If that sounds awful, imagine how it feels to the children born with it.

One in 227 people carries the defective gene that causes EB. Fortunately, most never express the disease. For those that do, EB means skin can peel away at the softest touch. With skin as fragile as the wings of a butterfly, everyday pleasures like eating, sleeping, walking & playing — can bring fear and pain.

We have a plan to defeat EB. It’s a plan that not only promises to change the lives of families fighting this disease but also to change the way rare disease treatments are found.

Through tireless research, scientists have identified the mutation that leads to EB. They believe they know how to fix the problem. And they believe that this fix is applicable to many genetic diseases. But because most people have never heard of EB, a lack of funding holds back an end to this devastating condition.

The biggest obstacle to curing EB isn’t science — it’s funding.

REAL PEOPLE, REAL STORIES

TILLY: SIMPLEX

LISA: DYSTROPHIC

NINA & OTTO: SIMPLEX

SOPHIE: SIMPLEX

SHOP TO SUPPORT

OFFICIAL MERCHANDISE TO #HEALEB

EB Research Partnership (EBRP) funds research to find a cure for Epidermolysis Bullosa (EB), a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack the proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement, and wounds that may never heal. Today, there are no approved treatments or cures. EBRP is dedicated to changing that. All proceeds from our store benefit critical research to find treatments and a cure for EB. Together, we can #healEB.

EB Research Partnership Australia is the largest not-for-profit funding research aimed at treating and ultimately curing Epidermolysis Bullosa.