News & Blog

Featuring Sahar Kazouini and Dr. Amy Paller  Interview By: Dr. Vijaytha Muralidharan and debra of America Living with Epidermolysis Bullosa (EB) brings unique challenges that can affect daily life, from physical pain to financial distress and emotional strain. For many, creativity becomes not only…

At just 9 years old, Rayleigh is uplifting the EB Community with her heartfelt project, “Shining Light on EB.” Living with Epidermolysis Bullosa Simplex (EBS), she has embraced her platform as the current USA National Miss Yellowhammer to raise awareness and support for others affected by EB.  The…

Stores are swapping out displays of sunscreen and pool floats for pencils and paper. It's time to transition from the lazy days of summer, back to the classroom. I get many calls about navigating school with Epidermolysis Bullosa (EB) throughout the year. Sending your child to school for the first…

Hi everyone! My name is Leandro, and I am a 16-year-old student at Washington International School. I am excited to share my journey and experiences as an intern at debra of America in celebration of National Intern Day.  I decided to become an intern for debra for various reasons. I have EB…

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…

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…

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 (…

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.…

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…

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…