The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
A New Dawn for EB: The 2024 debra of America Benefit in LA
On Saturday, October 26, 2024, we gathered at the stunning SoFi Stadium in Los Angeles to celebrate a new dawn for Epidermolysis Bullosa (EB) at the debra of America Benefit. Taking place during EB Awareness Week, the evening was one of hope and progress, recognizing the reality of FDA-approved…
Abeona Therapeutics Resubmits Application for Promising RDEB Treatment Pz-cel
Abeona Therapeutics announced today that it has resubmitted its Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) for Pz-cel (prademagene zamikeracel), an investigational treatment for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This innovative therapy, which…
Dr. Anna Bruckner to be Honored with Jouni Uitto Impact Award
On Saturday, October 26, 2024, Dr. Anna Bruckner will be honored with the Jouni Uitto Impact Award at the debra of America Benefit at SoFi Stadium in Los Angeles. She will be recognized for her exceptional contributions to the Epidermolysis Bullosa (EB) Community.
Dr. Bruckner, Professor of…
EB Community Member, Rafi Kopelan, to be Honored with Spirit Award
The debra of America Spirit Award is given each year to an adult and a young person with EB who have not only faced the challenges of the disorder but have made a positive impact through awareness, fundraising, or by leading exceptional lives.
On Saturday, October 26, 2024, Rafaella “Rafi”…
Strengthening Our Mission: debra of America Expands Its Board of Directors
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…
EB Community Member, Megan Gosselin, to be Honored with Spirit Award
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 to be honored with Partners in Progress Award
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,"…
Living Creatively with Epidermolysis Bullosa (EB)
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…
Shining Light on EB: A Young Advocate’s Heartfelt Mission
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…
Navigating School with EB: A Parent's Guide to a Successful School Year
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…
