The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Chiesi Global Rare Diseases Joins debra as Diamond Sponsor for the 2024 debra Care Conference
debra of America is thrilled to announce Chiesi Global Rare Diseases as a Diamond Sponsor of the 2024 debra Care Conference (DCC) on July 28-31 in Atlanta, GA.
Giacomo Chiesi, Head of Chiesi Global Rare DiseasesChiesi GRD, a family-owned and operated biopharmaceutical company, is committed to…
Krystal Biotech Joins debra as Diamond Sponsor for the 2024 debra Care Conference
debra of America is thrilled to announce Krystal Biotech as a Diamond Sponsor of this year’s debra Care Conference (DCC) in Atlanta, GA on July 28-31.
Krystal Biotech is a gene therapy biotechnology company that developed Vyjuvek™, the first U.S. FDA-approved treatment for Dystrophic…
Expert Guidelines for Using FDA-Approved Vyjuvek™ (B-VEC)
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 (…
FDA Director Dr. Lola Fashoyin-Aje to Keynote 2024 debra Care Conference (DCC)
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 (EB) In The Heat
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…
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…
