News & Blog

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, 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…

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…

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…

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…

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…

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…

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…

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…

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…