Country for PR: United States
Contributor: PR Newswire New York
Friday, October 09 2020 - 00:00
AsiaNet
EB Research Partnership and EB Research Foundation Come Together as Largest Global Organization Advancing Research for Epidermolysis Bullosa
NEW YORK and MELBOURNE, Australia, Oct. 9, 2020 /PRNewswire-AsiaNet/ --

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

 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. 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 www.bonfire.com/store/ebresearch. For shipping from Australia, visit 
www.ebresearch.org.au/shop.

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 Partnership
Founded 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
Australia: www.ebresearch.org.au 

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


SOURCE: EB Research Partnership