The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.

U.S. FDA Approves ZEVASKYN™ for RDEB

The U.S. FDA Approves ZEVASKYN™ for RDEB

April 29, 2025
We’re thrilled to share an exciting milestone for the Epidermolysis Bullosa (EB) Community: ZEVASKYN™, formerly known as pz-cel, the first-ever cell-based gene therapy skin graft for Recessive Dystrophic Epidermolysis Bullosa (RDEB), has been officially approved in the United States by the U.S. FDA…
debra of America Intern David Shon

#InternAppreciationMonth: Spotlight on David Shon

April 28, 2025
This #InternAppreciationMonth, we are proud to spotlight David Shon, an outstanding intern who has brought passion, insight, and dedication to debra of America’s mission.   Living with EB Simplex, David has made a lasting impact through projects such as expanding our physician database and…
Ryan Fullmer, Heather Fullmer, Michael

A Letter from debra of America's Chair, Ryan Fullmer

April 14, 2025
Ryan Fullmer, founder of EBRP and Heal EB, shares his personal decision to shift his support to debra of America. In the letter below, he explains why debra’s impact today is critical for individuals and families living with Epidermolysis Bullosa (EB).  A Strategic Shift — Why I’m Supporting Debra…
Epidermolysis Bullosa Advocacy

The Fight for EB Care: We Need Your Voice Now!

April 08, 2025
Critical healthcare policies that could significantly improve the lives of people with Epidermolysis Bullosa (EB) and other rare diseases are being left out of federal budget negotiations. These policies were included in temporary funding bills last year—but were removed at the last minute. The…
Smile Fund Epidermolysis Bullosa

From Wishes to Reality: The Smile Fund in Action

March 26, 2025
At debra of America, we do more than provide care and support for those living with Epidermolysis Bullosa (EB)—we help create lasting memories of joy and connection. Living with EB means daily pain, exhausting routines, and constant challenges. debra created the Smile Fund to give individuals and…
Child with Epidermolysis Bullosa

Finding Friendship & Confidence: The Power of EB Youth Mentorship

February 19, 2025
A simple conversation. A shared laugh. A game of Battleship. Sometimes, the smallest moments leave the biggest impact.  For kids and teens growing up with Epidermolysis Bullosa (EB), it can be tough to find others who truly understand what it’s like. That’s why debra of America’s Youth Mentorship…
Child with Epidermolysis Bullosa

Act Now: Protect EB Families by Defending Section 504

February 12, 2025
Right now, a lawsuit called Texas v. Becerra is putting vital disability protections at risk. Seventeen states are suing the U.S. government to get rid of Section 504 of the Rehabilitation Act, a federal law that has safeguarded disability rights for over 50 years. If successful, this lawsuit could…
Photo of EB Family

A Look Back at 2024 and Forward to 2025

December 31, 2024
As we reflect on this past year, we are filled with gratitude for the incredible support that has fueled our mission to improve the lives of those impacted by Epidermolysis Bullosa (EB). 2024 was a year of progress, innovation and connection!  Here’s a look back at some of the milestones we…
Advocacy

Advocating for Access to Genetic Testing for Rare Diseases

December 06, 2024
At debra of America, we are proud to lead efforts that advocate for improved healthcare access for those living with Epidermolysis Bullosa (EB) and other rare diseases. Together with the Personalized Medicine Coalition, we’ve taken a key role in drafting a sign-on letter to the Centers for Medicare…
Abeona Therapeutics Logo

FDA Decision on New RDEB Gene Therapy Expected by April 29, 2025

November 12, 2024
Exciting News from Abeona Therapeutics — The U.S. Food & Drug Administration (FDA) has accepted Abeona Therapeutics’ resubmitted Biologics License Application (BLA) for Pz-cel (prademagene zamikeracel), a potential new gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This…