The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Managing Epidermolysis Bullosa (EB) In The Heat
Happy Spring! As the weather warms up and the flowers start to bloom, it is a good time to talk about managing the symptoms of Epidermolysis Bullosa (EB) in the heat. People with EB live in every climate all over the world, but hot days can create unique challenges for those with fragile skin. Heat…
Bridging the Gap: EPICrd and the Fight for Equitable Healthcare Access for the EB Community
Exciting strides are being made in the world of Epidermolysis Bullosa (EB) with the U.S. FDA approval of two therapies. However, amidst this progress, our community continues to face challenges, particularly in accessing care. Insurers – both public and private – often limit or delay access to the…
Research Update: Pz-cel for RDEB
Back in November 2023, the U.S. Food and Drug Administration granted priority review for Pz-cel (prademagene zamikeracel) and set a PDUFA date of May 25, 2024, which is when they would have decided on whether the treatment is approved or not.
However, earlier this week, Abeona Therapeutics…
Meet the Faces Behind the DCC Planning Committee
The countdown has begun for the 2024 debra Care Conference (DCC) on July 28-31 in vibrant Atlanta, GA! This extraordinary gathering brings together individuals and families impacted by Epidermolysis Bullosa (EB), alongside leading experts in the field, for four days of education, connection, and…
TEAM DEBRA Spotlight: Suzanne Head in the Flying Pig Marathon
Joining our endurance team, TEAM DEBRA, in the Flying Pig Marathon in Cincinnati, OH on May 4-5, 2024 is the amazing Suzanne Head. Suzanne will be taking on the Half Marathon in memory of her daughter, Harlee Bass, who lived with Recessive Dystrophic Epidermolysis Bullosa (RDEB).
“TEAM DEBRA has…
Choosing Wound Care Supplies for your Unique Needs
As debra of America's EB Nurse, I have the privilege of speaking to many people with questions about wound care. Wound care is a critical aspect of managing Epidermolysis Bullosa (EB) effectively. EB is characterized by fragile skin prone to wounds and blisters. Wound care for someone with EB…
TEAM DEBRA Spotlight: Nick Meisinger in the Los Angeles Marathon
Joining debra of America’s endurance team, TEAM DEBRA, in the Los Angeles Marathon this March is Nick Meisinger! Nick prepares to take on the challenging 26.2 miles as a heartfelt tribute to his cousin's late child, Theo, who lived with Severe Junctional Epidermolysis Bullosa.
“Theo was born…
Bridging Gaps and Moving Forward: Our Wound Care Distribution Program Journey
In the heart of debra of America’s mission to support those battling Epidermolysis Bullosa (EB), is our Wound Care Distribution Program. With the recent relocation of our headquarters from New York to Colorado, we're not just changing our address; we're enhancing our capacity to serve and support…
We've Moved our HQ to Boulder, CO!
Exciting news —After four decades in the bustling Big Apple, we’ve moved our headquarters to beautiful Boulder, Colorado! This new location will allow our dedicated team to better serve and support our Epidermolysis Bullosa (EB) Community.
Our office is located at 1023 Walnut Street, Suite 100,…
The U.S. FDA Approves FILSUVEZ topical gel for JEB and DEB
debra of America is thrilled to announce a groundbreaking milestone for the Epidermolysis Bullosa (EB) Community: The U.S. Food and Drug Administration (FDA) has granted approval for FILSUVEZ® (birch triterpenes) topical gel for the treatment of partial thickness wounds in patients 6 months and…
