The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
A Letter from debra of America's Chair, Ryan Fullmer
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…
The Fight for EB Care: We Need Your Voice Now!
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…
From Wishes to Reality: The Smile Fund in Action
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…
Finding Friendship & Confidence: The Power of EB Youth Mentorship
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…
Act Now: Protect EB Families by Defending Section 504
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…
A Look Back at 2024 and Forward to 2025
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…
Advocating for Access to Genetic Testing for Rare Diseases
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…
FDA Decision on New RDEB Gene Therapy Expected by April 29, 2025
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…
Making an Impact with Word Surge: Elisabeth’s Mission to Educate and Give Back
In this blog post, we’re thrilled to spotlight Elisabeth Pol, a NICU Assistant living with Recessive Dystrophic Epidermolysis Bullosa (RDEB), who has channeled her passion for learning into a unique and impactful project. Elisabeth created Word Surge, a word search book focused on medical…
A New Dawn for EB: The 2024 debra of America Benefit in LA
On Saturday, October 26, 2024, we gathered at the stunning SoFi Stadium in Los Angeles to celebrate a new dawn for Epidermolysis Bullosa (EB) at the debra of America Benefit. Taking place during EB Awareness Week, the evening was one of hope and progress, recognizing the reality of FDA-approved…
