EB Research Partnership

10/20/2026

Today, October 20, is the deadline to request an opportunity to speak at an upcoming public meeting on the FDA's Rare Disease Framework Initiative.

On October 28, the FDA and Reagan-Udall Foundation for the FDA will host a public meeting to gather input on how the FDA approaches the development and review of treatments for rare diseases.

For people living with epidermolysis bullosa (EB) and other rare diseases, this is an opportunity to share perspectives on the unique challenges of developing treatments for small patient populations and why patient experiences matter in the process.

Virtual registration to attend is still available!

🩷 Register here:

Reagan-Udall Foundation for the FDA, independent 501(c)(3) organization created by Congress to advance the mission of the Food and Drug Administration.

10/18/2026

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-signup

10/16/2026

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

10/13/2026

At the Milken Institute FasterCures, a Center of the Milken Institute event, Celebrating America's Patient Advocates, EB Research Partnership CEO and Rare Ventures Founder Michael Hund joined Dr Rowland Illing, Chief Medical Officer and Director of Global Healthcare and Life Sciences at Amazon Web Services (AWS) 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 Milken Institute, FasterCures, a Center of the Milken Institute, Sanofi US , Dr Rowland Illing 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. 🦋

10/12/2026

We’re so excited to welcome Chris Ulmer to the Venture Into Cures stage this November. 🦋

Through Special Books by Special Kids, Chris has spent years creating space for people to share their stories in their own words, including his friend John Hudson Dilgen, a beloved member of the EB community who passed away earlier this year.

Reflecting on their final interview together, Chris shared, “When talking about his legacy during this interview, John Hudson shared that he just wants to be remembered as somebody who helped make life for kids with EB easier. He dreamed that his advocacy could play a part in eventually curing EB.”

That same spirit of care and generosity has been reflected by the entire SBSK community, whose support over the years has helped raise more than $700,000 for EB research. 🩷

If you’d like to be part of the impact behind Venture Into Cures, you can support EB research at the link below. 100% of your donation goes directly to EB research.

https://ebresearch.org/vic2026?utm_source=facebook&utm_medium=organic_social&utm_campaign=VIC2026

10/07/2026

Alyssa Cangemi-Schwarz will take on her first TCS New York City Marathon in support of EB Research Partnership, running in memory of John Hudson Dilgen, the younger brother of her best friend, Kalilla. 💗

For Alyssa, these miles are a way to honor John Hudson while helping advance research for families living with epidermolysis bullosa (EB).

”EBRP means believing that no child or family should have to live with the pain and uncertainty of EB forever. It represents resilience, compassion, and the power of people coming together to accelerate research that can change lives—not someday, but as quickly as possible” Alyssa says.

🦋 Visit Alyssa’s fundraising page to support her run and help move EB research forward at https://give.ebresearch.org/fundraiser/7266521

10/02/2026

Three-year-old Eden wants to dance, sing with her big sister, and experience childhood like any other kid. But living with recessive dystrophic epidermolysis bullosa (EB) means even everyday moments can cause painful wounds.

We’re grateful to Eden’s family for sharing a look at life with EB and to the community rallying around them through Eden’s Day. 🦋

Stories like Eden’s are why awareness matters. The more people understand EB and the realities families face every day, the stronger the community working toward more progress!

Read Eden’s story below. 💙

Three-year-old Eden Mann loves to dance, sing with her older sister and do the things other kids her age do.

10/01/2026

09/30/2026

In our Town Hall last month, Dr. Peter Marinkovich shared a closer look at a gene therapy approach his team at Stanford University is developing for junctional epidermolysis bullosa (JEB).

EB Research Partnership awarded $330,584 to help move this work forward in our most recent research cycle, supporting Dr. Marinkovich’s team as they explore whether genetically corrected cells could one day help strengthen the tissues in the mouth and airway.

🦋 Donate to fund more research like this and sign up for future Town Halls to hear directly from the scientists behind the work.

🎥 Watch the full Town Hall at ebresearch.org/town-halls

09/28/2026

When heavyweight boxer Luis “King Kong” Ortiz became an EB Research Partnership Ambassador in 2019, there were zero FDA-approved treatments for epidermolysis bullosa.

Today, there are three.

As Luis prepared to return to the ring this past weekend, DAZN revisited his family’s connection to EB and the role he has played in bringing greater visibility to this rare disease.

“Every time someone like Luis chooses to share their family’s story, it helps more people understand what it means to live with EB and why advancing research is so urgent.” - EBRP CEO Michael Hund.

We’re grateful to Luis for continuing to use his platform to bring attention to EB and for helping more people see just how much progress is possible when families, researchers, advocates and supporters move with urgency.

🦋 Read the full story from DAZN:

At 47, Luis Ortiz will make his return to boxing Sunday, facing undefeated Abigail Soto in the Dominican Republic. Why, when pushing 50, is ‘K...