The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Advocating for Access to Genetic Testing for Rare Diseases
At debra of America, we are proud to lead efforts that advocate for improved healthcare access for those living with Epidermolysis Bullosa (EB) and other rare diseases. Together with the Personalized Medicine Coalition, we’ve taken a key role in drafting a sign-on letter to the Centers for Medicare…
FDA Decision on New RDEB Gene Therapy Expected by April 29, 2025
Exciting News from Abeona Therapeutics — The U.S. Food & Drug Administration (FDA) has accepted Abeona Therapeutics’ resubmitted Biologics License Application (BLA) for Pz-cel (prademagene zamikeracel), a potential new gene therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This…
Making an Impact with Word Surge: Elisabeth’s Mission to Educate and Give Back
In this blog post, we’re thrilled to spotlight Elisabeth Pol, a NICU Assistant living with Recessive Dystrophic Epidermolysis Bullosa (RDEB), who has channeled her passion for learning into a unique and impactful project. Elisabeth created Word Surge, a word search book focused on medical…
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,"…
