EB Research Partnership

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.

08/11/2026

What does a summer day look like? We asked the EB community. 🦋

For some families it means staying indoors where it's cool and safe. For others, hours of planning just to get outside. Every version is shaped by EB, a rare disease that makes skin painfully fragile.

More treatments, and one day a cure, would make it less hard. This season, we're funding summer memories.

100% of every gift funds research 💛→ https://give.ebresearch.org/campaign/816809/donate?utm_source=facebook&utm_medium=organic_social&utm_campaign=unstoppable_summer_2026&utm_content=feed_post

08/05/2026

Exciting news for the EB community! The SD-101 clinical trial is now recruiting!

SD-101 is an investigational whole-body topical cream being studied for children with Simplex, Recessive Dystrophic, or Junctional (nH) EB, ages 1 month to 12 years.

The trial is now enrolling at:
Mission Dermatology
29829 Santa Margarita Pkwy, Ste 500, Rancho Santa Margarita, CA 92688
Principal Investigator: Dr. Shireen Guide
Study Coordinator: Andrew Sparacino
Call: 949-858-3376 ext. 107
Email: [email protected]

See full eligibility details on clinicaltrials.gov: https://clinicaltrials.gov/study/NCT07482787

View other EB clinical trials: https://www.ebresearch.org/clinical-trials

🦋

Find current clinical trials for Epidermolysis Bullosa. Learn how to participate and contribute to groundbreaking EB research.

08/05/2026

A voice that moves audiences around the world is now helping move us closer to a cure. 🦋

We are proud to welcome internationally acclaimed soprano Eleonora Buratto as an Ambassador for EB Research Partnership.

Eleonora has long stood alongside people and families living with Epidermolysis Bullosa, using her platform to raise awareness and creating the Butterfly Gala in Italy to support the EB community.

Eleonora, we are deeply grateful to have you by our side as we accelerate research, grow hope and work toward a cure for every person living with EB.

Read the press release: https://www.prnewswire.com/news-releases/eleonora-buratto-appointed-ambassador-for-eb-research-partnership-302843291.html?tc=eml_cleartime