News & Blog

7-year-old Leah is the only person in Union County, Florida living with Epidermolysis Bullosa (EB). From the moment she was diagnosed, her parents, Ashley and Ricky, knew that they needed to be her fiercest advocates. 

On Saturday, November 1, 2025, the Rendon-Espinosa family and their San Antonio community will come together for the Do It for Eli 5K, an event created to

On Saturday, October 25, 2025, Kaycie Artus and Dr.

Every year, the debra of America Spirit Award celebrates an adult and a young person with Epidermolysis Bullosa (EB) whose strength and spirit shine through their efforts to raise awareness, inspire others, and make a difference in the EB Community. 

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

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.  

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). 

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.

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.

A simple conversation. A shared laugh. A game of Battleship. Sometimes, the smallest moments leave the biggest impact.