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

Working Together

Strengthening Our Mission: debra of America Expands Its Board of Directors

October 08, 2024
We are thrilled to announce an exciting expansion of our Board of Directors at debra of America. Our new board members come from diverse professional backgrounds, each bringing a unique perspective that will improve our efforts in raising awareness, enhancing fundraising efficiency, and delivering…
Megan Gosselin Spirit Award

EB Community Member, Megan Gosselin, to be honored with Spirit Award

October 07, 2024
On Saturday, October 26, 2024, Megan Gosselin will be honored with the Spirit Award at the debra of America Benefit at SoFi Stadium in Los Angeles, CA. RSVP here!  The debra of America Spirit Award recipient is a person with Epidermolysis Bullosa (EB) in the United States who possesses great…
Paradigm Therapeutics Logo

Paradigm Therapeutics to be honored with Partners in Progress Award

October 03, 2024
On Saturday, October 26, 2024, Paradigm Therapeutics will be honored with the Partners in Progress Award at the debra of America Benefit at SoFi Stadium in Los Angeles, CA. RSVP here!  “I want to thank debra of America for selecting our Paradigm team to receive the Partners in Progress Award,"…
Sahar Kazouini

Living Creatively with Epidermolysis Bullosa (EB)

September 17, 2024
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…
Rayleigh Epidermolysis Bullosa Awareness

Shining Light on EB: A Young Advocate’s Heartfelt Mission

August 12, 2024
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…
A young girl with EB painting.

Navigating School with EB: A Parent's Guide to a Successful School Year

August 05, 2024
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…
Leandro debra of America Intern

Meet debra Intern, Leandro!

July 25, 2024
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…
Chiesi Global Rare Diseases 2024 debra Care Conference

Chiesi Global Rare Diseases Joins debra as Diamond Sponsor for the 2024 debra Care Conference

July 16, 2024
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 and debra Care Conference logos

Krystal Biotech Joins debra as Diamond Sponsor for the 2024 debra Care Conference

July 08, 2024
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…
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 (…