The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Maryland Prescription Drug Affordability Meeting: How the EB Community Can Get Involved
Maryland’s Prescription Drug Affordability Board (PDAB) is holding an important online meeting on Monday, December 8, 2025, to discuss drug pricing in the state. While the discussion isn’t currently focused on EB treatments, decisions made now could eventually affect access to advanced therapies…
Leah’s Story: Shining a Light on EB in Union County
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 8, 2025, they’re taking a brave step forward with their…
Honoring Eli and All Those Living with EB
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 honor Eli, a young boy living with Epidermolysis Bullosa (EB), and to raise awareness and for all those impacted by this rare condition. …
Dr. Amy Paller and Kaycie Artus to be Honored with Jouni Uitto Impact Awards
On Saturday, October 25, 2025, Kaycie Artus and Dr. Amy Paller will be recognized with the Jouni Uitto Impact Award at the debra of America Gala at Southern Exchange Ballrooms in Atlanta.
Named after one of the most influential EB researchers in the world and a member of debra’s Board of…
EB Community member, Zay’Lynn Johnson, to be Honored with Spirit Award
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.
On Saturday, October 25, 2025, Zay’Lynn Johnson…
The U.S. FDA Approves ZEVASKYN™ for RDEB
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…
#InternAppreciationMonth: Spotlight on David Shon
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…
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…
