Contact:
Public Relations Exchange
Phone: +61 (0) 430 159 690
Email: prasmussen@prx.com.au
FEATURED PRESS
- March 16, 2021
Cam (Sincs) Sinclair joins team EB Research Partnership (Australia)
EB Research Partnership is delighted to announce that Nitro Circus legend Cam (Sincs) Sinclair has officially joined our team as Ambassador. Cam has been actively involved with EBRP Aus for years, he is a wonderful contributor and is often seen at events. We’ve loved working with Cam over the years and we are excited to make it official. Download media release
Welcome to our team Cam!!
- November 20, 2020
Tough Tilly hopes for happy ending to fairy tale story
Tough Tilly, the two-year-old half-sister of Centenario, faces her biggest challenge yet this Saturday night at Tabcorp Park – and true to her namesake, she’s ready to put up a fight.
The filly is named after Tilly Wilkes, an inspirational 9-year-old who was born with Epidermolysis Bullosa, a rare genetic condition that results in wounds that never heal, disfigurement, blisters, bleeding, and ever-present pain…..Download Media Release
- March 26, 2019
PROQR SPINS OUT ALL DEB ACTIVITIES INTO NEWLY FORMED WINGS THERAPEUTICS CREATED BY EBRP
ProQR Therapeutics announced the strategic spin out of all Dystrophic EB (DEB) activities into Wings Therapeutics, a new company formed and financed by EB Research Partnership. Wings Therapeutics will continue to conduct clinical trials of QR-313 in exon 73 and progress other RNA molecules designed for other DEB mutations. Read the full press release
- November 27, 2018
NONPROFIT’S INNOVATIVE INVESTING HELPS CURE A CHILDHOOD DISEASE
Creator by WeWork featured EBRP in a piece highlighting our innovative venture philanthropy model that is changing the way nonprofits think about fundraising and expediting the path to treatments and cures for EB. Read the article.
RECENT PRESS
- April 7, 2020
LETTER FROM CEO IN RESPONSE TO COVID-19 PANDEMIC
EBRP CEO, Michael Hund, details our response to the COVID-19 pandemic and reaffirms our commitment to discovering treatments and cures for EB. Read the full statement by clicking the button below.
- March 27, 2020
WELLESLEY RESIDENTS SUPPORT FUND-RAISER FOR ‘BUTTERFLY CHILDREN’
“When we asked Emily very early on how we could help, she said, ‘you can help me by finding a cure for my daughter,’” says Kristan Fletcher Khtikian to the The Boston Globe. In response, 10 lifelong friends of EBRP Board Member and mother to Elodie, Emily Kubik, founded the Plunge for Elodie in 2018. Over the past 3 years, the #PlungeForElodie has raised over $600,000.
- February 29, 2020
EB RESEARCH PARTNERSHIP ANNOUNCES THE 3RD ANNUAL PLUNGE FOR ELODIE FUNDRAISER MARCH 7 & 8, 2020, WITH FIVE SAME-WEEKEND PLUNGES AROUND THE GLOBE
In honor of Rare Disease Day, EB Research Partnership announced the 3rd annual Plunge For Elodie will be held on March 7 & 8 and has become an international event with five plunge locations. Orginally a small hometown fundraiser, the goal this year is $300,000, all of which benefits EB Research Partnership. Click the button below to read the full press release.