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EB Research Partnership (@EBResearch) profile picture

EB Research Partnership

@EBResearch

EB Research Partnership funds research aimed at treating and curing Epidermolysis Bullosa (EB). 🦋 #HealEB 🔬 Find a cure

 New York, NY
ebresearch.org
Joined June 2013
  • Tweets2.6K
  • Following383
  • Followers3.3K
1.2KMedia
Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)Photo by EB Research Partnership (@EBResearch)
A global story of urgency, love, and science, now ready for the world. Matter of Time is available to Netflix members everywhere on February 9.
Matter of Time documentary on Netflix, premiering February 9. A powerful rare disease film following families living with Epidermolysis Bullosa, researchers racing toward treatments, and Eddie Vedder’s benefit concert supporting EB research.

ALT Matter of Time documentary on Netflix, premiering February 9. A powerful rare disease film following families living with Epidermolysis Bullosa, researchers racing toward treatments, and Eddie Vedder’s benefit concert supporting EB research.

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From early research to the next stage of development. 🦋 EBRP was the first philanthropic funder of this research at @Stanford . Today, Nova Anchora announced $23M in financing to advance an investigational therapy for dystrophic EB. Our Venture Philanthropy model in action. Read more: biospace.com/press-releases/…
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
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This is Rosie Mae. 🦋 Rosie was born with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic condition often called “butterfly skin” because it’s as fragile as a butterfly’s wings. The smallest touch can make her skin blister and tear, which means constant wound care and daily resilience from both Rosie and her mom, Danielle. And yes, those are real butterflies! Stories like Rosie’s are why we do this work. There’s no cure for EB yet, but the research we fund is changing what’s possible. On the last day of #EBAwarenessWeek , help keep that progress moving for Rosie and every family living with EB. Every gift is matched dollar for dollar by the Oros family, and 100% goes to EB research. 💗 ebresearch.org/ebaw2026.html…
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
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As our Development Associate, Margot Sosa has spent more than two years hearing what daily life with EB looks like. This year, she saw it firsthand. Margot got to spend time with Mary Steck, founder of the Fragile Wings Fierce Hearts Gala, and her daughter Mackenzie, who lives with RDEB. During the visit, Margot helped lance one of Mackenzie’s blisters. That’s one part of a daily routine where bandage changes alone can take three to six hours. “In a few hours in that room with her and Mackenzie, I learned more than I ever could have imagined. What I witnessed was love, strength, and resilience in its purest form.” Mary and Mackenzie, thank you for letting us into your world. And happy 2nd belated birthday, Mackenzie! 💗 Before #EBAwarenessWeek wraps, help fund the research that could make days like this easier. Every gift is matched dollar for dollar by the Oros family, and 100% goes to EB research. 🦋 ebresearch.org/ebaw2026.html…
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
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When it comes to EB, Charlie knows exactly what he’s wishing for. A cure. He lives with things most of us will never fully understand, and he still meets almost every day with a smile. The Oros family launched this $100,000 match to celebrate how far EB research has come and to push it further. In 2010, there were just 2 clinical trials for EB. Today there are more than 50. Every one of those trials moves Charlie’s wish a little closer. Thanks to our community, we’re more than 75% of the way there. Every gift is matched dollar for dollar, and 100% goes to EB research. #EBAwarenessWeek ends tomorrow. Let’s finish strong. Double your donation today. 🦋 ebresearch.org/ebaw2026.html…
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EB Research Partnership retweeted
RARE Revolution Magazine® (@RareRevolutionM) profile picture
RARE Revolution Magazine®
@RareRevolutionMOct 29
This week is EB Awareness Week! October 25–31 is a time to come together and raise awareness for epidermolysis bullosa (EB), a group of rare genetic skin disorders that cause extremely fragile skin and painful blistering. For the children, adults, and families living with EB, awareness matters. So does the research bringing us closer to more treatments and, ultimately, a cure. We're proud to support @EBResearch and the incredible EB community this week. If you're able, consider making a gift to help move EB research forward. For more information, visit ebresearch.org #EBAwarenessWeek #EpidermolysisBullosa
Image from RARE Revolution Magazine® (@RareRevolutionM)
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EB Awareness Week starts TODAY! 🦋 Charlie's dad, John Oros, has seen hope take shape in new EB treatments and progress toward a cure. This week, the Oros family is matching donations up to $100K. Every gift is doubled, and 100% funds EB research. 🩷 Donate → ebresearch.org/ebaw2026.html…
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One week until EB Awareness Week. 🦋 From October 25–31, here at EB Research Partnership, we’ll be using EB Awareness Week to bring even more attention to the realities of epidermolysis bullosa (EB), a group of rare genetic skin disorders that can cause extremely fragile skin and painful blistering. You’ll hear from people living with EB and the families who love them, see some of the science moving forward, and find simple ways to help more people understand EB. Stay tuned. 🩷 Join our newsletter to stay connected → ebresearch.org/newsletter-si…
A person with bandaged arms is standing and placing a cap on their head, featuring large cartoon eyes. The image promotes "EB Awareness Week" from October 25-31, raising awareness for Epidermolysis Bullosa, a rare genetic skin disorder.

ALT A person with bandaged arms is standing and placing a cap on their head, featuring large cartoon eyes. The image promotes "EB Awareness Week" from October 25-31, raising awareness for Epidermolysis Bullosa, a rare genetic skin disorder.

A person in a hospital bed, with visible skin conditions, looks up. Text on the image announces "One week until EB Awareness Week," emphasizing awareness for Epidermolysis Bullosa from October 25-31.

ALT A person in a hospital bed, with visible skin conditions, looks up. Text on the image announces "One week until EB Awareness Week," emphasizing awareness for Epidermolysis Bullosa from October 25-31.

A smiling adult holding a child with visible skin bandages. The image has a text overlay reading "One week until EB Awareness Week, October 25-31. Epidermolysis Bullosa, or EB, a group of rare genetic skin disorders that cause blistering, tearing, and fragility of the skin." A butterfly logo is included.

ALT A smiling adult holding a child with visible skin bandages. The image has a text overlay reading "One week until EB Awareness Week, October 25-31. Epidermolysis Bullosa, or EB, a group of rare genetic skin disorders that cause blistering, tearing, and fragility of the skin." A butterfly logo is included.

A person smiles while sitting in a medical setting. Text overlay promotes "EB Awareness Week" happening October 25-31, highlighting Epidermolysis Bullosa, a rare genetic skin disorder.

ALT A person smiles while sitting in a medical setting. Text overlay promotes "EB Awareness Week" happening October 25-31, highlighting Epidermolysis Bullosa, a rare genetic skin disorder.

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Ten years ago, people who love Elodie decided to take action, and that’s what we call the Plunge for Elodie today! 🩷 What began as a way to rally around one little girl has grown into a community powered movement bringing together EB families, friends, advocates and supporters across the country to raise Epidermolysis Bullosa awareness and raise funds for research. During this year’s EB Awareness Week, we’re bringing some of the people behind the Plunge together for our October Town Hall. You’ll hear how it grew, why they keep showing up year after year, and how you can bring that same energy to your own community! 🦋 October 27 | 5 PM ET RSVP to join us: ebresearch.org/townhallrsvp
Poster for "The Plunge turns 10" event during EB Awareness Week, organized by EB Research Partnership. Features text about an October Town Hall for the 2027 Plunge for Elodie. Date and time: October 27, 5 PM ET. Includes RSVP information. Image shows a smiling adult holding a child dressed in a fairy costume.

ALT Poster for "The Plunge turns 10" event during EB Awareness Week, organized by EB Research Partnership. Features text about an October Town Hall for the 2027 Plunge for Elodie. Date and time: October 27, 5 PM ET. Includes RSVP information. Image shows a smiling adult holding a child dressed in a fairy costume.

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At the @MilkenInstitute @fastercures event, Celebrating America's Patient Advocates, @EBResearch CEO and Rare Ventures Founder Michael Hund joined @DrRowIlling Illing, Chief Medical Officer and Director of Global Healthcare and Life Sciences at @amazon Web Services to take on a question every patient organization is facing right now. As AI reshapes healthcare, how do we make sure it strengthens the human connection patients depend on? The promise is real, but so is the responsibility. The session explored where AI is already proving useful for advocacy groups and where expectations are still ahead of the evidence. These tools can compress timelines and surface insights that once took far longer to reach. Even so, the strongest systems will always depend on people. Patients willing to share their experiences. Advocates who understand their communities. Researchers who can interpret the science. Partners who know when human judgment matters most. New technology should help move better treatments and, ultimately, cures closer while preserving the trust that makes progress possible. We're grateful to the @MilkenInstitute , @fastercures , @sanofi , @DrRowIlling and everyone who brought this conversation together. It was energizing to be back in the room with so many patient advocates and healthcare leaders across sectors turning ambitious ideas into systemic change. 🦋
Two individuals are standing in front of a backdrop with the Milken Institute logo. Both are dressed in suits and smiling at the camera.

ALT Two individuals are standing in front of a backdrop with the Milken Institute logo. Both are dressed in suits and smiling at the camera.

Two people are seated on a stage at the Milken Institute event. One individual is speaking into a microphone, while the other listens attentively. A backdrop features the Milken Institute logo. Audience members are visible in the foreground.

ALT Two people are seated on a stage at the Milken Institute event. One individual is speaking into a microphone, while the other listens attentively. A backdrop features the Milken Institute logo. Audience members are visible in the foreground.

Two individuals are seated on stage in armchairs, engaged in conversation at the Milken Institute event. They are surrounded by a blue backdrop featuring the Milken Institute's logo. An audience is visible in the foreground.

ALT Two individuals are seated on stage in armchairs, engaged in conversation at the Milken Institute event. They are surrounded by a blue backdrop featuring the Milken Institute's logo. An audience is visible in the foreground.

Two individuals are seated on a stage at the Milken Institute event. They are engaged in a discussion, with one holding a microphone and gesturing while the other listens attentively. A blue backdrop displays the Milken Institute logo. A table with water bottles and a glass is between them.

ALT Two individuals are seated on a stage at the Milken Institute event. They are engaged in a discussion, with one holding a microphone and gesturing while the other listens attentively. A blue backdrop displays the Milken Institute logo. A table with water bottles and a glass is between them.

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Who better to lead a conversation on the next decade of #RareDisease innovation and impact than @CNBC’s @BeckyQuick? Co-anchor of @SquawkCNBC," host of #CNBCCures, and the parent of a child living with a rare disease, Becky brings a unique perspective to the #NORDSummit. Her extensive experience interviewing some of the world’s most influential business leaders is matched by a deeply personal understanding of the urgent need for more treatments and improved care for people living with #RareDiseases and their families. On October 26, she’ll bring those perspectives together as she moderates a critical conversation with four CEOs on the innovation, investment, challenges, and opportunities that will shape the future of rare disease. Be part of the conversation. Register to join us in Washington, D.C., or virtually today: nordsummit.org
A promotional graphic for the NORD Breakthrough Summit, held October 25-27 in Washington, D.C. It announces "The Next Decade of Rare Disease: A CEO Leadership Dialogue," moderated by Becky Quick, co-anchor of CNBC's "Squawk Box" and host of "CNBC Cures."

ALT A promotional graphic for the NORD Breakthrough Summit, held October 25-27 in Washington, D.C. It announces "The Next Decade of Rare Disease: A CEO Leadership Dialogue," moderated by Becky Quick, co-anchor of CNBC's "Squawk Box" and host of "CNBC Cures."

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One dollar, working again and again to move science forward. On @SquawkCNBC, EBRP CEO and Rare Ventures Co-Founder Michael Hund shared how Venture Philanthropy can help promising research advance while creating the potential to reinvest returns into future breakthroughs. Thank you @BeckyQuick and @andrewrsorkin for making space for the conversation and helping bring greater visibility to EB and rare disease research. 🦋 Watch more from the conversation and explore the latest EBRP news and coverage in the Press section at ebresearch.org
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
Image from EB Research Partnership (@EBResearch)
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ZEVASKYN® (prademagene zamikeracel), an FDA-approved gene-modified cellular sheet therapy, is now available at University of Florida Health (UF Health). 📍 ZEVASKYN was approved by the FDA in April 2025 📍 To see a list of additional ZEVASKYN Qualified Treatment Centers that are now accepting patients, visit zevaskyn.com/treatment-cente… 📍 Patient support is available through Abeona Assist® at abeonaassist.com Connect with people who have been treated with ZEVASKYN, and their caregivers, through the Strong Together Network™ at 1-888-782-4042 💡Learn more at ZEVASKYN.com
Image from EB Research Partnership (@EBResearch)
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Pain and itch in EB are not just symptoms. They are signals. This Pain Awareness Month, we’re spotlighting EBRP-funded research led by Amy Paller, MD, at Northwestern University. Her team is studying how chronic wounds may activate a loop between the skin, nerves, and immune system, keeping pain and itch “turned on” even beyond visible wounds. This research is also exploring the body’s own pain-regulating system, called the endocannabinoid system, as a possible path toward safer, non-opioid relief for people living with EB. By better understanding what drives EB pain and itch, Dr. Paller’s team hopes to move closer to treatment options that are more targeted and built for daily life. 🦋 Donate today and join The Effect → give.ebresearch.org/campaign… #PainAwarenessMonth
Image from EB Research Partnership (@EBResearch)
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What began as a new way to fund EB research has become a model for what can come next. Tomorrow @EBResearch CEO and Rare Ventures Co-Founder Michael Hund will take the stage at the @GlobalGenes RARE Drug Development Symposium. 🦋 Tune in: globalgenes.org/rdds-2026/ra…
Image from EB Research Partnership (@EBResearch)
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EB Research Partnership retweeted
NYSE 🏛 (@NYSE) profile picture
NYSE 🏛
@NYSESep 4
Today on NYSE Live: Peter Tuchman, @EinsteinoWallSt Michael Hund, Rare Ventures Itamar Apelblat, @TheTokenSec Tune in 9am ET. xitter.gq/i/broadcasts/1qGvveBNd…
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NYSE 🏛

Today on NYSE Live | Annaly Capital Rings NYSE Opening Bell to Mark New Rare Ventures’ Initiative

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EB Research Partnership retweeted
Pittsburgh Business Times (@PghBizTimes) profile picture
Pittsburgh Business Times@PghBizTimesSep 5
Rare Ventures, backed by the Richard King Mellon Foundation and Eddie Vedder, rang the NYSE opening bell to launch its rare disease treatment platform in Pittsburgh. bizjournals.com/pittsburgh/n…
Rare Ventures rings NYSE opening less than month after launch

Rare Ventures rings NYSE opening less than month after launch

Rare Ventures, backed by the Richard King Mellon Foundation and Eddie Vedder, rang the NYSE opening bell to launch its rare disease treatment platform in Pittsburgh.

bizjournals.com
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EB Research Partnership retweeted
Squawk Box (@SquawkCNBC) profile picture
Squawk Box
@SquawkCNBCAug 19
Rare Ventures CEO Michael Hund discusses venture philanthropy for rare diseases & using AI to connect treatments and clinicians: cnb.cx/4xOWI67
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EB Research Partnership retweeted
Pittsburgh Business Times (@PghBizTimes) profile picture
Pittsburgh Business Times@PghBizTimesAug 12
The Richard King Mellon Foundation is investing $25 million in Rare Ventures, a Pittsburgh-based platform co-founded by Pearl Jam's Eddie Vedder to accelerate rare disease treatment development. bizjournals.com/pittsburgh/n…
Richard King Mellon Foundation invests $25M in rare disease venture backed by Pearl Jam's Eddie...

Richard King Mellon Foundation invests $25M in rare disease venture backed by Pearl Jam's Eddie...

The Richard King Mellon Foundation invests $25 million in Rare Ventures, a Pittsburgh-based platform co-founded by Eddie Vedder to accelerate rare disease treatment development.

bizjournals.com
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EB Research Partnership retweeted
Carnegie Mellon University (@CarnegieMellon) profile picture
Carnegie Mellon University
@CarnegieMellonSep 4
Leaders from CMU and Rare Ventures joined members of the rare disease community to ring the opening bell at the @NYSE. The milestone comes about a month after CMU joined Rare Ventures as a founding partner in the initiative which aims to transform therapies for rare diseases.
Image from Carnegie Mellon University (@CarnegieMellon)
Image from Carnegie Mellon University (@CarnegieMellon)
Image from Carnegie Mellon University (@CarnegieMellon)
Image from Carnegie Mellon University (@CarnegieMellon)
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