EB Research Partnership

09/04/2026

Today, we were proudly joined by members of the EB and rare disease communities at the New York Stock Exchange to ring the Opening Bell® for Rare Ventures. About one year ago, EBRP stood on that same stage. Today, we returned with more momentum and a bigger team to accelerate our work in EB while pioneering a path for rare disease at large.

Headquartered in Pittsburgh and built for the world, Rare Ventures is a first-of-its-kind venture philanthropy platform uniting EBRP with world-leading rare disease experts from Stanford Medicine, Pitt Health Sciences, UPMC Children's Hospital of Pittsburgh, Pitt Ophthalmology/UPMCVisionInstitute, Carnegie Mellon University, and ElevateBio. Together, with these partners, we will combine artificial intelligence, clinical research, therapeutic development, manufacturing and commercialization into a single engine built to accelerate treatments and cures for rare diseases, with EB at the center.

A huge thank you to the Richard King Mellon Foundation for making this vision possible, the New York Stock Exchange for hosting us, and everyone who made this moment a reality. Ringing the bell isn't just symbolic, it's an invitation for the world to stand with us, help us drive research forward, and together we can change the future of EB. 🦋💙

📷: New York Stock Exchange

09/03/2026

26.2 miles. One very personal reason why. 🦋

On November 1, Amanda Mazza will take on the 2026 TCS New York City Marathon in support of EB Research Partnership and she’ll be running every mile in honor of Graham, the son of her sister’s best friend, who lives with epidermolysis bullosa (EB).

Meeting Graham changed the way Amanda saw both running and the challenges families living with EB face.

“Watching such a young child face daily pain with incredible strength inspired me to do something meaningful.”

Amanda is no stranger to the marathon course. A mom of five, business owner, and 12-time marathoner, she hopes to eventually complete a marathon in all 50 states. But this race carries a different meaning.
“On the toughest training days, I remind myself why I’m running. I think about Graham and the resilience he shows every single day while living with EB.”

For Amanda, those miles are about turning something she loves into progress for families like Graham’s, raising awareness and funding research toward better treatments and, ultimately, a cure.

As she puts it: “For children like Graham, every mile is a step toward hope.”

Visit Amanda’s fundraising page to support her miles toward a cure 🦋 https://give.ebresearch.org/fundraiser/7380425

09/01/2026

September is Pain Awareness Month. 🩷

For people living with Epidermolysis Bullosa (EB), pain can be part of everyday life from the very beginning.

EB is a rare genetic disease that causes extremely fragile skin, chronic wounds, and pain from even minor friction.

Throughout the month, we’ll share more about what pain can look like in EB, while also highlighting the research, care, and lived experiences that shape this community. That includes work to improve pain management, support EB clinics, and advance EB research toward more treatments and a cure.

As we build awareness, we remain focused on helping more people understand EB while advancing the research that can change what the future looks like.

That’s why we created The Effect, a community of monthly donors helping keep promising EB research moving forward, month after month.

🦋 Join The Effect. Donate at ebresearch.org/donate

08/27/2026

We lost a true original this week.

Dolly Parton brought so much more than her extraordinary talent to the world. She brought kindness, humor, generosity and an instinct to use her voice to help others.

We were incredibly fortunate to have Dolly be part of Reportin’ For Duty, the celebration created to honor the life and legacy of Leslie Jordan. Dolly joined an extraordinary group of artists and friends who came together in Leslie’s memory, with proceeds from the show supporting EBRP and its mission.

There was something especially fitting about Dolly honoring Leslie. They both had that rare ability to make people feel lighter, more welcome and more loved, and both understood the importance of giving back.

Not only did Dolly Parton love butterflies, she made them a symbol of who she was. That feels especially meaningful to us at EBRP. Rest in peace, Dolly. Thank you for the music, the laughter, the generosity and the enormous heart. We will always love you. 🦋🩷

08/24/2026

What does progress look like for a subtype of EB with limited treatments today?

This August, EBRP hosts a Town Hall on life with Junctional EB and the groundbreaking work happening at Stanford. We'll hear from Dr. Peter Marinkovich, Associate Professor of Dermatology at Stanford; Hodges Caldwell Jr., a lifelong advocate living with Junctional EB who's participated in trials since age 4; and Michael Hund, EBRP's CEO, on recent progress across the EB space.

🦋 Monday, August 31 at 5 PM ET
🔗 RSVP: ebresearch.org/townhallrsvp

08/21/2026

Chris Ulmer from Special Books by Special Kids recently spent time with Jackson, who lives with RDEB and profound autism, and his mom and full-time caregiver, Jess.

Their story offers an honest glimpse into the challenges woven into each day, but also the extraordinary love and devotion that meet them at every turn.

We’re deeply grateful to Chris for continuing to stand alongside the EB community, using his platform to bring greater understanding, compassion, and awareness to families like Jackson and Jess.

🦋

Jackson's Fundraiser: https://www.gofundme.com/f/SupportJackson1J...

08/20/2026

EB Research Partnership CEO Michael Hund joined CNBC Squawk Box for a conversation about EB and the model EBRP has built to turn urgency into progress for this community.

Michael shared how EBRP’s Venture Philanthropy model has helped change the landscape of EB research, growing from just two active clinical trials to more than 50, with three therapies reaching FDA approval in the past three years. That model is why EB looks different today than it did twenty years ago, and Rare Ventures is how we move faster. As that work expands, EB remains the leading focus, as we continue pursuing treatments and a cure with the same urgency that has always defined our work, only faster, with more experts on board.

A huge thank you to Becky Quick and Andrew Ross Sorkin for giving EB and this community such an important platform. We’re deeply grateful for every opportunity to carry this mission further and bring greater awareness to the families at the heart of this work.

🦋 Watch the full conversation through our Press section on our website

08/15/2026

Every work of art holds a story. 🦋

Wings of Resilience brings together paintings, photography, poetry, digital art, and more created by members of the EB community. Each page offers a glimpse into the artist’s life, perspective, and experience with Epidermolysis Bullosa.

Created in collaboration with Abeona Therapeutics (ZEVASKYN®), this community art book celebrates the creativity of those impacted by EB.

💗 Explore the art book: ebresearch.org/artbook

08/14/2026

Today, Epidermolysis Bullosa (EB) reached a national audience on CBS News.

CBS News medical correspondent Celine Gounder, MD, ScM, FIDSA broke down what life with EB can look like, why rare disease research comes with unique challenges, and an important question facing the field...

How can we move rare disease research forward faster?

Each rare disease may affect a small number of people, but together, rare diseases impact millions of Americans and far too many still have no approved treatment.

But this is also where possibility comes in. Researchers, advocates, and partners across the rare disease community are finding new ways to study treatments, use patient data, and build smarter paths to move promising science forward.

We’re grateful to Dr. Gounder and CBS News for helping more people understand both and for bringing greater attention to what is possible for families living with EB and other rare diseases. 🦋

Watch the conversation:

Pearl Jam's Eddie Vedder is pushing to help kids with Epidermolysis...

08/12/2026

Zendaya once asked us to recognize the real superheroes among us. 🕷️🦋 

Celebrating Spider-Man Brand New Day in theaters, we’re looking back at her powerful contribution to Venture Into Cures 2021.

In this powerful clip, EBRP supporter Zendaya introduces Novelette Munroe, an award-winning poet, university graduate, and peer bereavement counselor living with Epidermolysis Bullosa (EB). Novelette’s story embodies the courage, compassion, and strength found throughout the EB community.