The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
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…
#GivingTuesday Spotlight: Scott Kerns
Today marks #GivingTuesday, a global generosity movement unleashing the power of people and organizations to transform their communities and the world. As we reflect on the incredible individuals who have made a lasting impact on debra of America’s mission, we are thrilled to shine a spotlight on…
#GivingTuesday Spotlight: Willistine Lenon
As we approach #GivingTuesday, a day dedicated to the spirit of generosity and giving back, we are delighted to shine a spotlight on a special supporter and advocate —Willistine Lenon, Vice President of Clinical Operations at Aegle Therapeutics, a biotechnology company that is developing an…
