EB Research Partnership

Philanthropy that funds treatments and a cure, then recycles those returns to fund the next breakthrough.

That's the model EB Research Partnership CEO Michael Hund brought to the 2026 National Organization for Rare Disorders, Inc. (NORD) Rare Disease Scientific Symposium in Arlington, VA. There, he joined leaders working to solve one of rare disease's most urgent challenges, sustaining research when small patient populations, long timelines, and limited commercial incentives leave traditional funding models behind.

Alongside Matthew S. McCoy, PhD ( University of Pennsylvania ) and Nicole Paulk, PhD (Siren Biotechnology ), moderated by Tracey Sikora, VP of Research and Clinical Programs at NORD, the panel explored how patient advocacy, academia, and industry can work together at every stage of development.

Michael shared EBRP’s Venture into Cures Model, a self-sustaining engine designed so one breakthrough can help fund the next.

To date, EBRP has helped drive more than $80M raised, 3 FDA-approved EB treatments, a 25x increase in active EB clinical trials since 2010, and 189 funded projects.

What works for EB can help rewrite the playbook for rare disease.

Thank you to NORD for creating a space where conversations like this can happen, and to everyone who tuned in. It's through opportunities like this that EBRP is able to share what we've learned and help shape what comes next for the entire rare disease community. We look forward to continuing to collaborate and push the field forward together.

🦋 Watch the panel: https://bit.ly/4xwmZqr

This Father’s Day, we’re honoring the dads and father figures in the EB community whose love, care, and strength make a difference every day.

Know an EB dad, grandpa, uncle, caregiver, or father figure we should celebrate?

Send us a message. 🤍

Where art meets science. 🎨🦋

Join us to celebrate the launch of our community art book and a conversation on the human side of EB research.

We'll hear from Emily Boros-Rausch, an artist living with EB; Lara Peck, an advocate who recently underwent ZEVASKYN; Dr. Amy Paller of Northwestern, one of the clinicians trained to deliver it; and Michael Hund, EBRP's CEO.

June 22 at 5 PM ET 🔗 RSVP: ebresearch.org/townhallrsvp

The road to a cure is built by people who refuse to stop. Graham’s Gang is proof. 💗

This year’s 5K brought Graham’s Gang together once again to run, walk, give, and show what it means to fight for a future without EB.

To Graham, his family, the Utica Roadrunners, and every runner, walker, sponsor, volunteer, donor, and supporter, thank you for turning love into action.

🦋 Ready to move for a cure? Join EB Active and turn your next walk, run, ride, or community event into funding for EB research.

ebresearch.org/ebactive

A moving story about Paul Seddon and his daughter, who lives with EB, and the creative outlet they’ve built together through assemblage art.

For his daughter, the process of making and selling their pieces is more than art therapy, Paul shared that it gives her “a sense of achievement and self confidence.”

While working on a new piece, they discovered a hidden letter inside a vintage sewing machine, uncovering its history and adding another layer of human connection to their story.

Newsweek:

Man dismantles vintage sewing machine, discovers letter hidden inside Paul Seddon and his daughter had planned on dismantling the sewing machine for one of their art pieces. Then they found something.

Stanford University OTL’s 2025 Annual Report features a story 20 years in the making: the path from early EB research at Stanford to FDA approval of ZEVASKYN®, a landmark gene therapy for RDEB.

For families living with EB, this breakthrough is more than a scientific milestone. It is proof that patient courage, bold research, and sustained funding can move discoveries from the lab to real life.

EBRP is proud to have supported more than $10 million in EB research at Stanford, helping bridge the long and difficult gap between early science and approved treatment.

Every breakthrough starts with belief. This one shows what belief can build.

🦋 Read the story at https://stanford.io/3RVgTzD

A powerful story about the Davis family, who honored what would have been Hallie Grace’s 5th birthday with their annual Butterfly Ball. Hallie Grace lived with EB and passed away at just three months old.

Through Heroes for Hallie Grace Inc., her family continues to raise awareness, fund EB research, and support families throughout their EB journey. 🦋

Family celebrates daughter’s 5th birthday with fundraiser for rare genetic condition Family celebrates daughter’s 5th birthday with fundraiser for rare genetic condition

And just like that… our final Plunge of the season is complete! 🌊💙

Last weekend, the Rippole Family and the Pittsburgh Plunge for Patterson community ended the Plunge for Elodie season with an incredible splash, tripling their fundraising goal for EB Research Partnership.

What a way to close out the season. Thank you, Pittsburgh, for showing up, diving in, and making waves for EB research.

The season may be complete, but the mission continues. Help us fund the research that brings us closer to a cure at plungeforelodie.org.