EB Research Partnership

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

[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.

[EB Research Partnership @EBResearch]

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 → https://t.co/jqF9Hr8m8G

[EB Research Partnership @EBResearch]

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: https://t.co/9aYKVYV44D

[EB Research Partnership @EBResearch]

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. 🦋

[National Organization for Rare Disorders (NORD) @RareDiseases]

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: https://t.co/iMRRiZ4yRr

[EB Research Partnership @EBResearch]

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 https://t.co/MtNfibuQzM

[EB Research Partnership @EBResearch]

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 https://t.co/tVtoqt5fAD
📍 Patient support is available through Abeona Assist® at https://t.co/cP8UECXxmD

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 https://t.co/y5aeSqUku4

[EB Research Partnership @EBResearch]

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 → https://t.co/QqCD9Nsu6z

#PainAwarenessMonth

[EB Research Partnership @EBResearch]

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: https://t.co/9CpjabCONG

[NYSE 🏛 @NYSE]

Today on NYSE Live:

Peter Tuchman, @EinsteinoWallSt
Michael Hund, Rare Ventures
Itamar Apelblat, @TheTokenSec

Tune in 9am ET. https://t.co/iTGxq3aRym

[Pittsburgh Business Times @PghBizTimes]

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. https://t.co/vS4LV1ARAn

[Squawk Box @SquawkCNBC]

Rare Ventures CEO Michael Hund discusses venture philanthropy for rare diseases & using AI to connect treatments and clinicians: https://t.co/omgd0sqvfs

[Pittsburgh Business Times @PghBizTimes]

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. https://t.co/JdK2qvOSe6

[Carnegie Mellon University @CarnegieMellon]

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.

[NYSE 🏛 @NYSE]

The NYSE welcomes Rare Ventures to celebrate its kind venture philanthropy platform designed to accelerate treatments and cures for rare diseases.

(NYSE: NLY) | @EBResearch

[EB Research Partnership @EBResearch]

Epidermolysis Bullosa (EB) is a rare genetic skin disease, but EB does not look the same for everyone.

There are four main types of EB: Epidermolysis Bullosa Simplex (EBS), Junctional Epidermolysis Bullosa (JEB), Dystrophic Epidermolysis Bullosa (DEB), and Kindler Syndrome (KS). Each affects the skin differently and can range widely in severity.

EB Research Partnership funds research aimed at understanding the biology behind EB, advancing promising therapies, and moving treatments and therapies from the lab toward people who need them, and ultimately, a cure.

🦋 Donate to accelerate EB research today: https://t.co/xLRN5Eb4XT

[EB Research Partnership @EBResearch]

September is Pain Awareness Month. 🩷

For people living with Epidermolysis Bullosa (EB), pain can begin at birth. EB causes fragile skin, wounds, and pain from minor friction.

Awareness builds understanding. Research changes the future.

🦋 Join The Effect: https://t.co/jJsexubt9B

[Carnegie Mellon University @CarnegieMellon]

More than 400 million people live with a rare disease, yet about 95% of them don’t have an approved treatment. CMU wants to change that.

CMU is a founding partner in Rare Ventures™, a first-of-its kind platform for accelerating rare disease therapies.
https://t.co/vt4z3NEesH

[EB Research Partnership @EBResearch]

100 days until #VentureIntoCures 2026. 🦋

Join us Nov. 11 at Pier Sixty in NYC for a powerful evening supporting treatments and cures for Epidermolysis Bullosa.

Tickets + sponsorships: https://t.co/S3fuAsbpwT

EB families receive complimentary seating: [email protected]

[EB Research Partnership @EBResearch]

@TomHolland1996 set a domino effect in motion. 🕷️🦋

As Spider Man: Brand New Day hits theaters, revisit his Venture Into Cures 2021 appearance with @Hevesh5 and help accelerate EB research.

VIC returns Nov. 11 in NYC! https://t.co/vyVnU5oEYv