The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Welcoming Two New Faces to the debra of America Team!
debra of America is growing! We're thrilled to announce two new additions to our team who bring passion, experience, and fresh energy to our mission of improving the lives of everyone affected by Epidermolysis Bullosa (EB): Daniel Martinez, Senior Director of Development, and Brooklyn Snyder,…
FDA Grants Fast Track Designation to Promising EBS Treatment
BioMendics has received FDA Fast Track Designation for their investigational gel treatment, BM-3103 (TolaSure® Gel™) for Epidermolysis Bullosa Simplex (EBS).
What is Fast Track Designation?
Fast Track Designation is granted to therapies targeting serious conditions with unmet medical needs. It…
Meet Carly and Kathryn: Joining Us at Par for a Purpose!
The countdown is on for Par for a Purpose: The debra Golf Classic, taking place Sunday, October 4, 2026, at the stunning Grayhawk Golf Club.
Hosted by debra of America, the day brings together supporters from across the country who are united in advancing care, advocacy, and research for those…
New Look, Same Mission: debra of America's Brand Identity Evolves
In 2013, debra of America introduced the logo and visual identity that many of you have come to know. It served us well through years of growth, advocacy, and tireless work on behalf of the Epidermolysis Bullosa (EB) Community. But the EB landscape has since changed, and so have we.
Today, we’re…
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…