The story of ebrpEB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to find a cure for Epidermolysis Bullosa (EB). Narrated by EBRP co-founder Eddie Vedder, The Story of EB Research Partnership explains our mission to heal EB and our plan to make cures a reality.
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How Critical, Genetic Research Could Change Lives EverywhereDr. Anthony Oro and Dr. Jean Tang take us behind the scenes look into the work being done in gene and cell therapy to cure Epidermolysis Bullosa – EB for short. The scientists and researchers, like Anthony and Jean, working to find a cure for EB are simply extraordinary. A cure is just within reach.
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Jennifer Garner Joins the EB Community to Dream of a World Beyond EBA world beyond EB is a world that is more limitless. Together we can achieve a world beyond EB.
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Olivia Rodrigo on the Beauty of the EB Community & Science Funded by EBRPPeople with EB have skin so delicate, they call it the butterfly disease. But like the butterfly, what begins as an impossible struggle can become a remarkable metamorphosis. There's beauty in the growth of science and magic in the transformation of research. Olivia Rodrigo helps explain how beautiful the EB community is and why a cure for EB is just within reach.
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#ComeSayHi With Eli & Eddie VedderEli Meyer is 6 years old. He's just a regular kid; he enjoys arts and crafts and jumping on his trampoline. Eli also has Junctional Epidermolysis Bullosa.
Eli's family adopted him from China when he was 4 and they live in California. His older sister Lily didn't like the stares that Eli received from strangers when they were out and about. The siblings decided to try to make a change and started the #ComeSayHi movement. Instead of staring, Eli and Lily encourage people to simply "Come Say Hi" to Eli to learn about EB and how they can help. They believe that when people understand each other and accept others' differences, the world will be a better place. Eli and Lily's message gained national attention after being broadcast on the WE Day special that aired on ABC on August 9, 2019. EBRP Co-Founder Eddie Vedder surprised Eli on screen with a new song written just for him and thanked the siblings for their noble efforts. Watch the video to learn more! |
Rowan's StoryRowan is a 3-year-old girl living with Recessive Dystrophic Epidermolysis Bullosa. EBRP has given Rowan's parents hope for a cure for their daughter and all others living with this devastating disorder.
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2019 AWS IMAGINE conference: closing keynote by jill vedder & michael hundAt Amazon Web Services' 2019 IMAGINE: A Better World, A Global Nonprofit Conference in Seattle, WA, EB Research Partnership Co-Founder Jill Vedder and CEO Michael Hund give the closing keynote address on how EB Research Partnership is accelerating the path to finding treatments and cures for EB, and in the process, changing how cures for rare disease are found.
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Time is Life |
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