For many years, EB Research Partnership has been working to find a cure for the rare disease Epidermolysis Bullosa, or EB. Over the last decade, we have made remarkable strides in this fight for a cure – including helping to accelerate the first two FDA approved EB treatments. We can all do our part in the fight against EB. Learn more and support by going to ebresearch.org | EB Research Partnership
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For many years, EB Research Partnership has been working to find a cure for the rare disease Epidermolysis Bullosa, or EB. Over the last decade, we have made remarkable strides in this fight for a cure – including helping to accelerate the first two FDA approved EB treatments. We can all do our part in the fight against EB. Learn more and support by going to ebresearch.org | EB Research Partnership
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Every day is a fight. Every day we are closer to a cure. This is Eli's story living with Epidermolysis Bullosa. | EB Research Partnership
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Every day is a fight. Every day we are closer to a cure. This is Eli's story living with Epidermolysis Bullosa. | EB Research Partnership
776.5K viewsMay 24, 2021
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The EB community continues to inspire us every day as we work toward a cure for Epidermolysis Bullosa – and beyond. This giving season, we’re thrilled to share that we’re so close to reaching our generous $250,000 match! Every dollar raised supports life-saving research for EB and drives meaningful progress for the entire rare disease community. Join us in creating a butterfly effect of hope and change. Donate, fundraise, or share this post to help us cross the finish line and double our impact!
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The EB community continues to inspire us every day as we work toward a cure for Epidermolysis Bullosa – and beyond. This giving season, we’re thrilled to share that we’re so close to reaching our generous $250,000 match! Every dollar raised supports life-saving research for EB and drives meaningful progress for the entire rare disease community. Join us in creating a butterfly effect of hope and change. Donate, fundraise, or share this post to help us cross the finish line and double our impact!
130 viewsDec 4, 2024
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Spreading awareness for #EB on the streets of NYC 🦋 💖 Learning how to say Epidermolysis Bullosa could be the first step to fighting for a cure alongside us. | EB Research Partnership
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Spreading awareness for #EB on the streets of NYC 🦋 💖 Learning how to say Epidermolysis Bullosa could be the first step to fighting for a cure alongside us. | EB Research Partnership
3.2K viewsOct 10, 2024
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The Story of EB Research Partnership Featuring Eddie Vedder | Venture into Cures
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The Story of EB Research Partnership Featuring Eddie Vedder | Venture into Cures
31K viewsNov 19, 2020
YouTubeEB Research Partnership
Did you know? Epidermolysis Bullosa is often called "The Worst Disease You've Never Heard Of." This rare condition affects about 1 in 20,000 live births, causing skin to be so fragile that even a gentle touch can lead to painful blisters and wounds. 💔 At EBRP, we're on a mission to change that. Together, we can turn awareness into action and turn "The Worst Disease You've Never Heard Of" into "The Worst Disease That We're Curing". 💙 Learn more at ebresearch.org. | EB Research Partnership
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Did you know? Epidermolysis Bullosa is often called "The Worst Disease You've Never Heard Of." This rare condition affects about 1 in 20,000 live births, causing skin to be so fragile that even a gentle touch can lead to painful blisters and wounds. 💔 At EBRP, we're on a mission to change that. Together, we can turn awareness into action and turn "The Worst Disease You've Never Heard Of" into "The Worst Disease That We're Curing". 💙 Learn more at ebresearch.org. | EB Research Partnership
2.7K viewsJan 6, 2025
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I'm so excited to join EB Research Partnership TODAY at 4PM ET for #VentureIntoCures, a virtual event to raise awareness and find a cure for Epidermolysis Bullosa (EB). We’re coming together with lots of friends to #HealEB! Join us for free at 2022.VentureintoCures.org. | Kermit the Frog
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I'm so excited to join EB Research Partnership TODAY at 4PM ET for #VentureIntoCures, a virtual event to raise awareness and find a cure for Epidermolysis Bullosa (EB). We’re coming together with lots of friends to #HealEB! Join us for free at 2022.VentureintoCures.org. | Kermit the Frog
8.9K viewsNov 20, 2022
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Not long ago, families living with Epidermolysis Bullosa had very few options, and even fewer answers. Rare diseases affect 1 in 10 people worldwide... meaning millions of families are still waiting for answers. During Rare Disease Awareness Month, Matter of Time reminds us what can change when urgency meets action. ONE WEEK until Matter of Time premieres globally on Netflix and we begin a are revolution. 🎥 Footage from our Matter of Time Seattle Premiere 🦋 Tap “Remind Me” https://www.netflix.
8.2K views3 months ago
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EB Research Partnership CEO Michael Hund wants YOU to take the #PlungeForElodie! 🥶❄️🦋 This is a fun, easy way to support all those battling Epidermolysis Bullosa (EB) and all rare disease. Make waves with us!!! give.ebresearch.org/plunge2024 | EB Research Partnership
85K viewsMar 12, 2024
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Venture Philanthropy
May 24, 2023
ebresearch.org
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EB Research Partnership CEO Aims to Eradicate Epidermolysis Bullosa Disorder
1 month ago
YahooNYSE
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Behind the Mystery: Epidermolysis Bullosa (EB)
13.6K viewsOct 25, 2021
YouTubeThe Balancing Act
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This past weekend, friends and supporters in Seattle came together at Alki Beach and Phoenecia to take the Plunge for Patterson and every child living with Epidermolysis Bullosa (EB)! ❄️💧🦋 The energy was incredible as plungers braved the icy waters to raise awareness and funds for this important cause. A huge thank you to everyone who participated, donated, and cheered them on! So far, the Seattle plunge has raised over $72,000—let’s help them reach their $90,000 goal! Plus, every donation is
593 viewsApr 2, 2025
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EB Research Partnership | LinkedIn
Jan 1, 2009
linkedin.com
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Cause The Wave: Eddie Vedder and the EB Research Partnership
224.5K viewsOct 2, 2014
YouTubeEddie Vedder
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Rowan's Story
774.5K viewsNov 27, 2018
YouTubeEB Research Partnership
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A world without EB is one that we believe in. ❤🦋 Feeling grateful for this community and everyone dedicating their efforts to finding a cure. Learn more about how you can support the EB community and EB Research Partnership at ebresearch.org | EB Research Partnership
237 viewsJun 29, 2023
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At EBRP, we have one bold audacious goal: cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. ​With the generous support of people like you, Tom Holland, and The Brothers Trust, EBRP achieved a record breaking year in 2023 for dollars raised and research funded. We raised more than $8 million to fund 18 innovative research projects across 5 countries. We're excited to continue this momentum in 2024. Learn more at
325 viewsFeb 2, 2024
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Momentum is evertyhing. We believe we can cure EB by 2030. Those living with EB are destined to fly. Go to ebresearch.org to learn how you can join us on this journey to cure EB – and pave a path for thousands of other rare diseases. #EBAwarenessWeek #VentureIntoCures #HealEB | EB Research Partnership
1.2K viewsOct 27, 2023
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At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. 🦋 The future is bright and with your support we can cure EB. Learn more and support here: ebresearch.org/ebrp_new | EB Research Partnership
7.8K viewsMay 17, 2024
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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. This #GivingTuesday, your gift can create a monumental impact - thanks to a incredible match from a generous donor, every donation up to $250,000 will be DOUBLED! Every dollar raised supports life-saving research for Epidermolysis Bullosa and helps drive meaningful change for the entire rare dise
1K viewsDec 2, 2024
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You can read about all the projects EB Research Partnership funds and donate so EBRP can continue to fund more innovative, life-saving research at ebresearch.org/our-impact | EB Research Partnership
157 viewsJun 18, 2024
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best. intro. ever. 💕🦋 so many special moments from @reportinforduty 2 more to come 💥🤠 | EB Research Partnership
5.1K viewsFeb 19, 2024
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Featuring Eddie Vedder and a community fighting to cure a rare disease, Matter of Time shows what happens when art and science collide. Streaming February 9 on Netflix. | EB Research Partnership
4.5K views3 months ago
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Meet Dr. Jean Tang and Dr. Anthony Oro from Stanford University. 🦋 EBRP is proud to support brilliant researchers and clinicians, like Jean and Tony, working around the clock to find a cure for EB. With your support we will continue to fund life-saving research around the world. Learn more and donate to support our work at https://www.ebresearch.org/pastsupporters.html | EB Research Partnership
535 viewsMay 23, 2024
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What's it like living with EB? Sanja in Norway (@lifewithdystrophiceb) was interviewed by @SeenStories to share her story. Sanja is a ray of light. Despite her daily battles with EB she is focused on living life to the fullest. 🦋💖 | EB Research Partnership
1.2K viewsJun 26, 2023
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Join us and the entire EB community in our mission to create a world without EB 🌍️ 💙🦸‍♂️ Visit ebresearch.org to see how you can help us #HealEB 🦋 | EB Research Partnership
215 viewsApr 18, 2023
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Jonah and his mother Patrice share their take on loving big, living life to the fullest, appreciating every moment, and how YOU can involved today to help cure EB😊💙🌟 | EB Research Partnership
568 viewsFeb 10, 2023
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EB Research Partnership on Reels
4.8K views8 months ago
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Since 2018 the @plungeforelodie has made waves for EB!!!! 🌊🌊🌊 10,000 amazing humans, including Jessica Biel, have taken the Plunge and supported to make this a GLOBAL MOVEMENT. 🥶🦋👏 In 2024, we will have more cities and local communities involved and it will be bigger than ever!!! You can take the Plunge with us virtually or in person this year!! Tag your friends below and head to give.ebresearch.org/plunge2024 #PlungeForElodie #PlungeforEB | EB Research Partnership
5.2K viewsMar 14, 2024
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