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EB Research Partnership
США
Добавлен 30 сен 2014
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
12 Days of Gratitude 2024 Year in Review | EB Research Partnership
Welcome to our 12 Days of Gratitude! As we reflect on 2024, we’re filled with appreciation for this incredible community driving toward our bold mission to accelerate treatments and a cure for EB. Together, we’re creating a butterfly effect that will transform the lives of those impacted by EB and 10,000+ other rare diseases.
We’re so thankful for the brilliant medical experts working tirelessly to find a cure, our visionary Board and Co-Founders, Jill and Eddie Vedder, for their leadership, our generous supporters for fueling this journey, and the courageous families facing EB who inspire us every single day. 💙
Let’s celebrate the progress we’ve made and the hope we share for the future! S...
We’re so thankful for the brilliant medical experts working tirelessly to find a cure, our visionary Board and Co-Founders, Jill and Eddie Vedder, for their leadership, our generous supporters for fueling this journey, and the courageous families facing EB who inspire us every single day. 💙
Let’s celebrate the progress we’ve made and the hope we share for the future! S...
Просмотров: 55
Видео
EB Research Partnership's CEO Michael Hund Speaks at AusBiotech Conference
Просмотров 31Месяц назад
EB Research Partnership (EBRP) CEO Michael Hund shares how the organization’s pioneering venture philanthropy model is driving life-changing advancements for rare disease patients. Learn how EBRP’s proven strategies, which have already made incredible progress in the fight against Epidermolysis Bullosa (EB), are being scaled to tackle other rare diseases. Michael dives into the power of collabo...
EBRP Town Hall | Plunge for Elodie 2025
Просмотров 723 месяца назад
During EBRP's October Town Hall you'll learn how you can help us make waves in our mission to cure EB by the end of this decade! You'll hear from Plunge for Elodie leaders around the country who are doing just that, including Emily Kubik, Elodie's mom and EBRP Board Member, Kristan Khtikian, Plunge for Elodie Co-Chair & Co-Creator, and Annie and Patterson McKenzie, EB warriors and advocates. We...
Eddie Vedder | Wings of Change | EB Awareness Week
Просмотров 3333 месяца назад
EB Research Partnership Co-Founder, Eddie Vedder, shares how inspired he is by the EB community and discusses the momentum being made on our journey to find a cure for EB - and beyond. Kicking off during EB Awareness Week 2025, the Vedders and EB supporters from around the world are joining #WingsofChange to raise funds for life-saving research and celebrating the strength of the EB community. ...
Wings of Change | EB Awareness Week
Просмотров 5573 месяца назад
EB Research Partnership co-founders Eddie Vedder & Jill Vedder share how inspired they are by the EB community. There is remarkable momentum being made on our journey to find a cure for EB - and beyond. Kicking off during EB Awareness Week 2025, the Vedders and EB supporters from around the world are joining #WingsofChange to raise funds for life-saving research and celebrating the strength of ...
Join Our Venture Into Cures | EB Research Partnership
Просмотров 1254 месяца назад
EB Research Partnership (EBRP) is the largest global organization dedicated to curing Epidermolysis Bullosa (EB), a devastating genetic skin disorder. Through innovative research and a venture philanthropy model, EBRP is accelerating treatments and cures not only for EB but also for thousands of other rare diseases. Ambassadors like Will Ferrell, Billie Eilish, Olivia Rodrigo, Selena Gomez, Tom...
Chiesi Total Care Community Council | EB Research Partnership
Просмотров 1055 месяцев назад
In our recent community council with the Chiesi Total Care Team, we delved into the comprehensive support services offered to patients. The Chiesi Total Care Team serves as a one-stop resource designed to make the therapeutic journey smoother for individuals dealing with rare diseases. The dedicated team made up of pharmacists, case managers, virtual wound care nurses, insurance support, and mo...
EB Research Partnership CEO Keynotes Chan Zuckerberg Initiative’s 2023 Science In Society Meeting
Просмотров 731Год назад
EB Research Partnership's CEO, Michael Hund, was a keynote speaker at the Chan Zuckerberg Initiative's 2023 Science in Society Annual Meeting: Advancing Patient-Driven Research In Rare Disease. In this keynote to open the Patients Driving Breakthroughs and Progress in Rare Disease Research, Treatments, and Cures session, Michael highlights the organization's work to advance research in Epidermo...
EBRP Community Council | Plunge for Elodie 2024
Просмотров 193Год назад
In this Community Council you'll learn how you can support the 2024 Plunge for Elodie and even start your own! Our speakers have hosted Plunges all across the country in oceans, aquatic centers, kiddie pools, ice baths, & more. In this Community Council you'll hear directly from our organizers on what it takes to plan a Plunge. This is an event to raise awareness and funds for critical research...
The Story of EB Research Partnership
Просмотров 3,1 тыс.Год назад
Founded in 2010 by Jill Vedder, Eddie Vedder of Pearl Jam, and a group of dedicated parents, EB Research Partnership (EBRP) is the largest global nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth. Thanks to the long-standing support of brave EB wa...
Patients Driving Breakthroughs & Progress in Rare Disease Research, Treatments, and Cures | EBRP
Просмотров 340Год назад
EB Research Partnership's Co-Founder, Eddie Vedder, Global Ambassador, Tom Holland, and CEO, Michael Hund, tell the story of those battling Epidermolysis Bullosa (EB) and how we can accelerate the path to cures by combining the power of the patient and cutting-edge technology.
University of South Australia Working Towards a Cure for EB | Venture into Cures 2022
Просмотров 386Год назад
Jonathan Brown, EB Research Partnership Australia, helps highlight the incredible EB research being done at University of South Australia to discover new technologies and therapeutics that will help those battling Epidermolysis Bullosa. Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal by making a donation to life-saving research at give.e...
Finding a Cure for EB & Pioneering The Model for Rare Disease | EBRP Yield Giving Open Call
Просмотров 610Год назад
EB Research Partnership is a game-changing medical research organization with one bold goal: accelerate treatments and a cure for Epidermolysis Bullosa (EB) by 2030 and in the process, pioneer a new business model for how disease can be cured. Thank you to Yield Giving and MacKenzie Scott for your consideration. Together, we can make EB history. Founded by a group of dedicated parents set out t...
CEO of EB Research Partnership Michael Hund on Venture Philanthropy | Venture into Cures
Просмотров 70 тыс.2 года назад
We thrive on opportunities to achieve the seemingly impossible. For those living with Epidermolysis Bullosa, or EB, living a pain free life, being able to eat, sleep, and even walk without suffering, is their elusive dream. But it's not impossible. EB is an often fatal genetic skin disorder that affects children from birth. But curing EB is not an if - only a when. And at EB Research Partnershi...
Chris Pratt & Solomon want Epidermolysis Bullosa to Be Extinct | Venture into Cures 2022
Просмотров 2,5 тыс.2 года назад
For 7-year-old Solomon Bonner, the roar of the dinosaur inspires him to be brave in his daily battle with EB. It's time we make EB extinct. A cure for Epidermolysis Bullosa is within reach. And in finding a cure for EB we can pave the way to curing thousands of other rare diseases as well. Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal ...
Olivia Rodrigo on the Beauty of the EB Community & Science Funded by EBRP | Venture into Cures 2022
Просмотров 178 тыс.2 года назад
Olivia Rodrigo on the Beauty of the EB Community & Science Funded by EBRP | Venture into Cures 2022
Joy Oladokun Honors the EB Community with Eddie Vedder's Matter of Time | Venture into Cures 2022
Просмотров 2,6 тыс.2 года назад
Joy Oladokun Honors the EB Community with Eddie Vedder's Matter of Time | Venture into Cures 2022
Hannah Simone Tells the Story of the Endlessly Brave & Positive Fazeel | Venture into Cures 2022
Просмотров 5 тыс.2 года назад
Hannah Simone Tells the Story of the Endlessly Brave & Positive Fazeel | Venture into Cures 2022
Emma Watson, Kermit the Frog & Elodie on How The Plunge for Elodie Began | Venture into Cures 2022
Просмотров 3,4 тыс.2 года назад
Emma Watson, Kermit the Frog & Elodie on How The Plunge for Elodie Began | Venture into Cures 2022
Keanu Reeves Discusses Healing Power of Art Alongside Artist Deanna | Venture into Cures 2022
Просмотров 1,9 тыс.2 года назад
Keanu Reeves Discusses Healing Power of Art Alongside Artist Deanna | Venture into Cures 2022
Jennifer Garner Joins the EB Community to Dream of a World Beyond EB | Venture into Cures 2022
Просмотров 4,3 тыс.2 года назад
Jennifer Garner Joins the EB Community to Dream of a World Beyond EB | Venture into Cures 2022
How Critical, Genetic Research Could Change Lives Everywhere | Venture into Cures 2022
Просмотров 6302 года назад
How Critical, Genetic Research Could Change Lives Everywhere | Venture into Cures 2022
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Просмотров 3893 года назад
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
Просмотров 1043 года назад
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
The Jonas Brothers Join the #EBIsNoJoke Movement | Venture Into Cures 2021
Просмотров 2513 года назад
The Jonas Brothers Join the #EBIsNoJoke Movement | Venture Into Cures 2021
A Mother's Story of Her Son's Battle with EB | Venture Into Cures 2021
Просмотров 4363 года назад
A Mother's Story of Her Son's Battle with EB | Venture Into Cures 2021
Zendaya Tells The Story of True Superhero Novelette | Venture Into Cures 2021
Просмотров 6813 года назад
Zendaya Tells The Story of True Superhero Novelette | Venture Into Cures 2021
Jonathan's Humor Helps Ease the Pain of EB | Venture Into Cures 2021
Просмотров 5233 года назад
Jonathan's Humor Helps Ease the Pain of EB | Venture Into Cures 2021
The EB Community's Dream of a World with a Treatment or Cure for EB | Venture Into Cures 2021
Просмотров 4703 года назад
The EB Community's Dream of a World with a Treatment or Cure for EB | Venture Into Cures 2021
Kristen Bell and Jack Black Know #EBIsNoJoke | Venture Into Cures 2021
Просмотров 1953 года назад
Kristen Bell and Jack Black Know #EBIsNoJoke | Venture Into Cures 2021