The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Running Miles for Miles: How One Dad is Taking on NYC for the EB Community
This November, Malcolm Stewart will take on 26.2 miles at the TCS New York City Marathon as a proud member of #TEAMDEBRA, carrying with him the spirit of his son Miles who lives with Epidermolysis Bullosa (EB).
Malcolm is no stranger to running through pain with purpose. A lifelong athlete, he…
A New Bill Introduced in Congress Could Improve Wound Care Coverage for the EB Community
A new piece of legislation introduced yesterday, March 9, 2026, in the United States House of Representatives could help improve access to essential wound care supplies for individuals living with Epidermolysis Bullosa (EB).
H.R. 7877 calls on the U.S. Department of Health and Human Services to…
Legislative WIN for the EB Community!
This week marks a significant milestone for children and families affected by Epidermolysis Bullosa (EB) and the broader rare disease community.
After passing the Senate last week and the House this week, the federal budget, which includes two of debra of America’s top legislative priorities,…
Take Action Today: Help Restore the PRV Program
Our Epidermolysis Bullosa (EB) Community is facing a major barrier to new treatments. The Rare Pediatric Disease Priority Review Voucher (PRV) Program, which incentivizes companies to develop therapies for very rare conditions, has been expired since December 2024. Without it, promising treatments…
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…
