Two Epidermolysis Bullosa Nonprofits United to Make the Largest Global Organization for EB

EB Research Partnership (EBRP) is based out of New York, United States. EB Research Foundation (EBRF) is an organization based out of Australia with the same goals. The two organizations  have just announced that they have come together to become a global epidermolysis bullosa (EB) organization. The organization is now largest for EB across the world. Their main goal is to fund research for EB, which could ultimately lead to new treatments and even a cure.

EB

EB is a genetic condition which causes the skin to be extremely fragile. Patients often have open wounds that they must bind each day. This process is painful and time-staking, and it is currently the only way to truly treat symptoms. There is no effective treatment for minimizing the skins fragility, and there is no cure.

Patients with EB are often called “Butterfly Children” since their skin is just as delicate and fragile as butterfly wings.  

The Partnership

The EBRP and the EBRF have worked together since 2018. They thought it was about time they formalize their partnership. They will both now be one under the title- EB Research Partnership Australia.

The organization will now be able to utilize EBRP’s impressive grant approval skills, business model, and expert Scientific Advisory Board to the fullest extent. As a part of their business model, they are able to generate recurring revenue from their grants when a particular treatment is successful commercially. They are then able to use these new funds to invest further into EB research. This process will continue until a cure is found.

Virtual Event

On November 18th, this new organization will hold its first joint virtual event. It is titled Venture Into Cures. The event will include patient testimonies, a word from the organizations cofounders, celebrity appearances, and more. You can tune into the event at 8m EST by visiting this website.

T-Shirts

The organization has released a limited-edition T-shirt to help spread the word of their new partnership. All of the proceeds from the sales will go toward EB research. You can purchase your shirt from the United States or Australia.

You can read more about this organization here.

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