The latest news from debra of America, from organizational happenings and inspiring stories to expert insights and research updates.
News & Blog
Act Now: Protect EB Families by Defending Section 504
Right now, a lawsuit called Texas v. Becerra is putting vital disability protections at risk. Seventeen states are suing the U.S. government to get rid of Section 504 of the Rehabilitation Act, a federal law that has safeguarded disability rights for over 50 years. If successful, this lawsuit could…
A Look Back at 2024 and Forward to 2025
As we reflect on this past year, we are filled with gratitude for the incredible support that has fueled our mission to improve the lives of those impacted by Epidermolysis Bullosa (EB). 2024 was a year of progress, innovation and connection!
Here’s a look back at some of the milestones we…
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…
