The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.

Dr. Amy Paller

Expert Guidelines for Using FDA-Approved Vyjuvek™ (B-VEC)

June 18, 2024
In a recent article in the Journal of Dermatological Treatment, Dr. Amy Paller, Dr. Anne Lucky, Dr. Shireen Guide and their colleagues offer practical guidelines for doctors, patients, and caregivers on using the newly U.S. FDA-approved Vyjuvek™ (B-VEC) to treat Dystrophic Epidermolysis Bullosa (…
Lola Fashoyin-Aje

FDA Director Dr. Lola Fashoyin-Aje to Keynote 2024 debra Care Conference (DCC)

June 13, 2024
debra of America is thrilled to announce our 2024 debra Care Conference (DCC) Keynote Speaker: Dr. Lola Fashoyin-Aje, MD, MPH! Dr. Fashoyin-Aje serves as the Director of the Office of Clinical Evaluation (Cell and Gene Therapies) within the Super Office of Therapeutics Products (OTP) at the U.S.…
Managing Epidermolysis Bullosa in the Heat

Managing Epidermolysis Bullosa (EB) In The Heat

May 01, 2024
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 can increase…
EPICrd Act for Rare Diseases

Bridging the Gap: EPICrd and the Fight for Equitable Healthcare Access for the EB Community

April 30, 2024
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…
Abeona Therapeutics

Research Update: Pz-cel for RDEB

April 23, 2024
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…
2024 DCC Planning Committee

Meet the Faces Behind the DCC Planning Committee

April 22, 2024
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

April 08, 2024
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…
Wound Care Products Epidermolysis Bullosa

Choosing Wound Care Supplies for your Unique Needs

March 06, 2024
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…
Nick Meisinger Los Angeles Marathon TEAM DEBRA

TEAM DEBRA Spotlight: Nick Meisinger in the Los Angeles Marathon

February 06, 2024
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…
Epidermolysis Bullosa Wound Care Distribution Program

Bridging Gaps and Moving Forward: Our Wound Care Distribution Program Journey

January 31, 2024
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…