2 EB Research Groups Based Continents Apart Partner to Advance New Treatments

Iqra Mumal, MSc avatar

by Iqra Mumal, MSc |

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New York-based EB Research Partnership (EBRP), along with the EB Research Foundation in Australia, announced a global collaboration that aims to develop lifesaving treatments for patients with epidermolysis bullosa (EB).

Under the rules of the partnership, the EB Research Foundation will help fund the EBRP’s independent Scientific Advisory Board (SAB).

The SAB, to be chaired by Anne Lucky, is a group of leading scientists and physicians who are responsible for recommending awards and grants to researchers and companies based on a treatment’s potential to help manage or even cure epidermolysis bullosa.

The EB Research Foundation will also provide funding to the EBRP’s innovative venture philanthropy model, which allows the foundations to take part in any potential commercialization of projects that were funded in an effort to help advance research.

“After their global review process, we are honored to be selected as EB Research Foundation’s partner,” Alex Silver, chairman of EBRP, said in a press release. “EB Research Foundation shares our passion, commitment and dedication to healing EB.

“True to our founding principle, we believe that by working together we will be able to achieve faster results for those battling EB. We are thrilled to have EBRF as our partner in this journey,” Silver added.

Scott Didier, chairman of the EB Research Foundation, said the partnership “connects us directly to the world leaders in this space. Our combined force will enable our funds to drive new life-saving research and advance existing research into a cure for EB, like never before.

“We are passionate about finding a cure for EB sufferers and excited about what our partnership can achieve,” he said.

EBRP, established in 2014, is the biggest nonprofit committed to funding research focused on treating and ultimately curing EB. The group carries out its mission by collaborating with nonprofit and for-profit organizations, foundations, donors, and the epidermolysis bullosa and research communities.

The Australia-based EB Research Foundation, founded in 2016, is dedicated to raising significant funds through corporate and individual sponsorships and hosting fundraising events.

The main goal of the EBRF is to increase the life expectancy of patients with EB. Currently, the foundation relies only on the generosity of individuals and companies who donate.