Fri Oct 9

EB Research Partnership and EB Research Foundation Come Together as Largest Global Organization Advancing Research for Epidermolysis Bullosa

Written by: PR Newswire Asia - The Times Au RSS

As the leading EB research funders worldwide, the group will combine to leverage EBRP's innovative business model to accelerate treatments and cures

NEW YORK and MELBOURNE, Australia, Oct. 9, 2020 /PRNewswire/ -- EB Research Partnership (EBRP), based in New York, and EB Research Foundation (EBRF) of Australia today announced they have united to become the largest global organization focused on funding research to discover treatments and cures for Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic disorders that affect individuals from birth.

As the two leading organizations funding EB research across the globe, EBRP and EBRF have formalized their funding partnership, which began in 2018, with EBRF coming under the EBRP banner as "EB Research Partnership Australia." They will leverage EBRP's competitive grant approval process, renowned Scientific Advisory Board, and innovative venture philanthropy business model to compound the impact of research funds. Together, the organizations will work around the clock to propel life-saving therapies into the hands of patients and families.

Streamed globally by Amazon, the organizations' inaugural joint effort is a first-of-its-kind virtual event, Venture Into Cures, airing on November 18, 2020 at 8pm EST (November 19, 2020 12pm AEDT) at www.ventureintocures.org ^[1]. The event will feature uplifting stories of individuals with EB and their families alongside EBRP Co-Founders Jill and Eddie Vedder and celebrity friends. This star-studded event will cement EB Research Partnership's standing as the leading nonprofit dedicated to finding a cure for EB and, in the process, pioneering the model for all rare diseases.

To commemorate the partnership, a limited-edition t-shirt designed by renowned Australian illustrator Travis Price is available for purchase, with all proceeds benefiting critical research. For shipping from the USA, purchase your t-shirt at bonfire.com/store/ebresearch ^[2]. For shipping from Australia, visit ebresearch.org.au/shop ^[3].

It is estimated that 500,000 people worldwide have EB. Children with EB are called "Butterfly Children" because their skin is as fragile as the wings of a butterfly: they face severe pain, open wounds (external and internal), and a grueling bandaging process on a daily basis. There is currently no treatment or cure for EB, however EBRP is dedicated to changing that as rapidly as possible.

"We're thrilled to join forces with EB Research Foundation, connecting the globe to advance promising research to treat and cure EB. They have been wonderful partners over the past two years, and we believe that we will achieve greater and faster results for those battling EB together as one organization," says Alex Silver, Chairman of EBRP.

Scott Didier AM, Chairman of EBRF and Executive Board Member of EBRP says, "Our shared mission to find treatments and cures for EB will be better served by uniting our organizations. We are looking forward to the great work our collective team will accomplish with combined resources and an established global presence."

About EB Research PartnershipFounded in 2010 by a dedicated group of parents and Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.

Working around the clock with offices in the US and Australia, EBRP utilizes an innovative venture philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.

To learn more, visit US: www.ebresearch.org ^[4]Australia: www.ebresearch.org.au ^[5]

Contact:EB Research Partnership Stephanie Ishoo, +1-646-844-0902stephanie@ebresearch.org ^[6]