EB Research Partnership | LinkedIn
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EB Research Partnership | LinkedIn
EB Research Partnership | 2,966 followers on LinkedIn. Find a Cure. Heal EB. | We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic skin disorders that affect children from birth. We are working to treat and cure EB as ...
Jan 1, 2009
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#Epidermolysis Bullosa Symptoms
Epidermolysis bullosa simplex - SlideServe
Epidermolysis bullosa simplex - SlideServe
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Epidermolysis bullosa: Video & Causes | Osmosis
Epidermolysis bullosa: Video & Causes | Osmosis
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Top videos
What is EB?
What is EB?
ebresearch.org
Oct 24, 2017
How venture philanthropy helps us to expedite finding a cure for EB. #HealEB http://bit.ly/2Mq6dWB | EB Research Partnership
0:47
How venture philanthropy helps us to expedite finding a cure for EB. #HealEB http://bit.ly/2Mq6dWB | EB Research Partnership
FacebookEB Research Partnership
634 viewsAug 16, 2019
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
1:08
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
FacebookEB Research Partnership
7.8K viewsMay 17, 2024
Epidermolysis Bullosa Treatment
Epidermolysis Bullosa Research and Treatment • Video • MEDtube.net
Epidermolysis Bullosa Research and Treatment • Video • MEDtube.net
medtube.net
6 months ago
A Kid with Severe Epidermolysis Bullosa (EB) on Hands, Knees & Legs Treated
9:43
A Kid with Severe Epidermolysis Bullosa (EB) on Hands, Knees & Legs Treated
portall.zp.ua
39.2K viewsDec 22, 2013
Epidermolysis bullosa . Epidermolysis bullosa (EB) is a very rare genetic skin condition and in worst cases can be fatal . Its diagnosed from birth by the neonatal team . This condition has 3 types and can vary from mild to severe. At present there is no cure of the condition and treatment is targeted to prevent complications . . In Pakistan there is lack of support for the children (and their parents ) with the condition .These children and their families need ongoing support with regards to tr
26:20
Epidermolysis bullosa . Epidermolysis bullosa (EB) is a very rare genetic skin condition and in worst cases can be fatal . Its diagnosed from birth by the neonatal team . This condition has 3 types and can vary from mild to severe. At present there is no cure of the condition and treatment is targeted to prevent complications . . In Pakistan there is lack of support for the children (and their parents ) with the condition .These children and their families need ongoing support with regards to tr
FacebookFareeha Jay
27.2K viewsOct 22, 2019
What is EB?
What is EB?
Oct 24, 2017
ebresearch.org
How venture philanthropy helps us to expedite finding a cure for EB. #HealEB http://bit.ly/2Mq6dWB | EB Research Partnership
0:47
How venture philanthropy helps us to expedite finding a cure for EB. #HealEB http://bit.ly/2Mq6dWB | EB Research Partnership
634 viewsAug 16, 2019
FacebookEB Research Partnership
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
1:08
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
FacebookEB Research Partnership
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
8.8K viewsNov 20, 2022
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It's only a Matter of Time... 6 days left ⏳ 🦋 The wait ends February 9. Matter of Time hits Netflix globally. | EB Research Partnership
1:04
It's only a Matter of Time... 6 days left ⏳ 🦋 The wait ends February 9. Matter of Time hits Netflix globally. | EB Research Partnership
3.6K views2 months ago
FacebookEB 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
0:15
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
FacebookEB Research Partnership
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
FacebookEB Research Partnership
1:01
Rare Disease Day is Fri, Feb. 28. Join Keanu Reeves, Kristen Bell, Ed Sheeran, John Legend and others to help find a cure for Epidermolysis Bullosa (EB), a series of life-threatening rare genetic disorders affecting the skin. | EB Research Partnership
56.3K viewsFeb 27, 2025
FacebookEB Research Partnership
3:51
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
536 viewsMay 23, 2024
FacebookEB Research Partnership
3:48
Thanks to the long-standing support of brave EB warriors, resilient EB families, brilliant medical experts, and generous donors, EBRP has been able to raise $60M for critical, life-saving research and fund 140 innovative EB projects, including helping to accelerate the first two FDA approved treatments for EB. While our goal is to cure EB, the research we support and our innovative model have the potential to help advance therapies for the 7,000 rare diseases that impact 10% of the global popula
1.2K viewsFeb 27, 2024
FacebookEB Research Partnership
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"I loved every single second of his inclusion into something that he loves…and could feel him experiencing his environment with a strong sense of pride and true acceptance, that sadly, he doesn’t get to see all too often with EB," says Kirk Brazeau, Archer's Dad. Read more below on a beautiful day remembered by Kirk and Archer's entire family. EB warriors like Archer have joy, fight, and bravery that is unmatched. Thank you for sharing Kirk. ❤️ ⚽ 🦋 --- “To accomplish great things, we must not o
2.7K viewsMar 11, 2024
FacebookEB Research Partnership
2:02
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
904 viewsAug 20, 2024
FacebookEB Research Partnership
5:15
We need a treatment and a cure for children, like Rowan, living with the life-threatening disease EB. #HealEB http://bit.ly/2KQKVy3 | EB Research Partnership
11.4K viewsAug 15, 2019
FacebookEB Research Partnership
2:43
Our Co-founders Jamie and Alex Silver talk about what it was like to learn their son, Jackson, was born with Epidermolysis Bullosa (EB) and how they're working to heal this rare, genetic disorder for all of the families in the EB Community. We're so thankful for our co-founders Jamie and Alex Silver who are committed to finding a cure for EB. Learn more about EBRP at ebresearch.org. | EB Research Partnership
1.7K viewsNov 24, 2020
FacebookEB Research Partnership
1:14
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
959 viewsDec 2, 2024
FacebookEB Research Partnership
3:07
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
1.1K viewsJun 26, 2023
FacebookEB Research Partnership
0:53
A friendly reminder from Allison McGettigan, Director of Programs at EB Research Partnership, to sign up for our April Town Hall being held on, Wednesday, April 30 at 5 PM ET (USA). This month’s discussion will feature representatives from TWi Biotechnology and EB House Austria, Principal Investigators on the EBShield Study, an EB ambassador, and the EBRP Team. Join us as we discuss the Phase 2/3 Trial that’s currently evaluating the efficacy and safety of diacerein for the treatment of severe a
503 views11 months ago
FacebookEB Research Partnership
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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
FacebookEB Research Partnership
2:54
EB mom, Patrice, shares the story of her son Jonah. Jonah is full of life – coaching his little brother's baseball team, taking care of his pets, participating in a modified baseball team himself, and more. Jonah is a light, breath of fresh air, and gift to everyone who has the privilege to know him. ❤🦋 Learn more about those living with EB at ebresearch.org/life-with-eb | EB Research Partnership
568 viewsAug 8, 2023
FacebookEB Research Partnership
4:17
We are heartbroken by the devastating news of the passing of EB community leader, Deanna Molinaro. Deanna was a fierce advocate, brilliant artist, and incredible person who we were blessed to work with and get to know over the years. She brought a fighting spirit, beauty, joy and bravery to everything she did. Deanna's legacy will always inspire us to fight EB with courage, urgency and hope, while having a little fun along the way, just as she did. Thank you Deanna for showing us what true brave
4.1K viewsNov 13, 2023
FacebookEB Research Partnership
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🦋💙 DEB & JEB community members can share insights and earn $100! Our partners at MedPanel are inviting individuals in the U.S. affected by Dystrophic and Junctional Epidermolysis Bullosa to participate in a 30-minute survey. Whether you're living with dystrophic or junctional EB or a caregiver, your insights are crucial to improve diagnosis and treatment, especially for those managing Junctional and Dystrophic EB. Take the survey here 👉 bit.ly/MedPanelsurvey | EB Research Partnership
188 viewsNov 8, 2024
FacebookEB Research Partnership
0:51
We’re so excited to see you at this month's Town Hall on Tuesday, September 24th! Connect with the #ebcommunity to learn about the research we’re funding. RSVP today & submit your questions here: https://bit.ly/EBRP_SeptTownHall?c_src=Facebook 📆 WHEN: September 24 at 5 PM ET 🧐 WHAT: A live Town Hall with Humphrey Hanley & Dr. Andrew South 🎥 WHERE: Virtually hosted by EBRP 🦋 WHY: To learn more about EB and the therapies that could change lives | EB Research Partnership
904 viewsSep 16, 2024
FacebookEB Research Partnership
0:16
Our first Live Town Hall of 2025 was an enlightening discussion of the journey from bench to bedside care for EB, with three insightful points of view! Hosted by EBRP CEO Michael Hund, this Town Hall featured three incredible speakers: 💙 Kate Holler, EB mom and advocate, shared her family’s journey with EB and discussed navigating the medical system, locating the right resources, and finding life-changing support. 🏥 Dr. Jamie Feinstein, University of Colorado and Children’s Hospital Colorado,
329 viewsFeb 7, 2025
FacebookEB Research Partnership
0:45
REMINDER: September Town Hall → patient-powered healing for DEB wounds Learn about D-Fi, a Phase 3 investigational therapy from Castle Creek Biosciences that uses a person’s own cells to help heal DEB wounds. Get clear updates, ask questions live, and see how you could get involved. 🦋 Speakers: Dr. David Chu, Alicia Stewart-Smith, and EBRP’s Allison Bolshagettigan 📅 Tomorrow, Sept 30 | ⏰ 5 PM ET RSVP now at the link in bio or go to www.ebresearch.org/townhallrsvp | EB Research Partnership
266 views6 months ago
FacebookEB Research Partnership
0:26
Support EBRP and win a trip to see Eddie Vedder in Seattle! 💥 🦋 ❤️ https://fandiem.com/sweeps/win-a-trip-to-catch-eddie-vedder-at-his-intimate-seattle-shows | EB Research Partnership
686 viewsSep 12, 2023
FacebookEB Research Partnership
1:02
“Things don't really always need to be elaborate. Every dollar helps. And that when kids engage hands on and turn their plans into action, they really can make such an impact.” — Alison Rippole In this August Town Hall clip, Alison and Julia Rippole share how simple, kid-led ideas, like a lemonade stand, can move real dollars and real awareness. If just 1% of U.S. teens (16–17) each raised $50, that’s about $25 million for EBRP. 🎥 Watch the full conversation on YouTube 🗓 NEXT UP: September Tow
412 views6 months ago
FacebookEB Research Partnership
0:36
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 views2 months ago
FacebookEB Research Partnership
1:07
Together, we are unstoppable. This #EBAwarenessWeek, we’re grateful to Tom Holland, The Brothers Trust, and the Holland family for being part of our community and helping carry hope forward. 🦋 Join The Brothers Trust and get involved with EB Research Partnership today to help fuel the flight and help turn research into cures. 100% of every dollar goes directly to advancing EB research, accelerating treatments, and ultimately a cure. https://www.ebresearch.org/unstoppablemigration.html?utm_sourc
18.6K views5 months ago
FacebookEB Research Partnership
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Yesterday we rang the Opening Bell at the New York Stock Exchange. Standing on that podium with EB families, partners, and supporters was more than a moment, it was a powerful reminder of what we can achieve together. Awareness into action. Venture into cures. 🦋 #NYSE #EBResearch | EB Research Partnership
316 views7 months ago
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