Saturday, October 25, 2025 | 6:00 - 10:00 PM
Southern Exchange Ballrooms | Atlanta, Georgia
We return to Atlanta for the 2025 debra of America Benefit to reflect on the progress made in advancing research, care, and support for those affected by Epidermolysis Bullosa (EB). This evening is dedicated to the strength and resilience of the EB Community and serves as a reminder of our continued commitment to improving the lives of individuals and families living with this rare and challenging condition.
The evening will feature cocktails and hors d’oeuvres, a silent auction, and a seated dinner. Proceeds from the Benefit will go directly towards supporting people living with EB, a painful, often fatal, and always debilitating rare genetic disease.
What is Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (or EB, for short) - "The Worst Disease You've Never Heard Of" - is a group of rare disorders caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters and tears from minor friction or trauma. The list of medical complications EB causes may be long and often requires multiple interventions from a range of medical specialists. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30.
There is currently no cure for EB, but there are treatments that help alleviate some of the debilitating symptoms of certain types of EB. In 2023, the U.S. Food & Drug Administration approved the first two treatments for EB, marking a historic milestone.
There are about 25,000 people living with EB in the US. It occurs in every racial and ethnic group and affects both genders equally. Click here for a more in-depth and comprehensive understanding of EB.
About debra of America
debra of America's mission is to improve the lives of those impacted by Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.” We integrate direct-to-patient programs and services, education, advocacy, close partnership with treatment developers, and research funding to foster meaningful change for those living with EB.
Each year, debra of America spends an average of $1.5 million on direct-to-patient programs and services to provide immediate relief to thousands of families across the country. Our research funding identified the genetic basis of EB and supports the science, which is at the forefront of gene and stem cell therapy, RNA repair, protein replacement, and inhibition of squamous cell carcinoma.
Our Honorees
Dr. Anna Bruckner
Jouni Uitto Impact Award
Megan Gosselin
Spirit Award
Rafi Kopelan
Spirit Award
Paradigm Therapeutics
Partners in Progress Award
Thank You to Our Generous Sponsors
Champions Sponsor
Visionaries Sponsor
Visionaries Sponsor
Visionaries Sponsor
Innovators Sponsor
Advocates Sponsor
Advocates Sponsor
Advocates Sponsor
Partners Sponsor
Partners Sponsor
Partners Sponsor
Partners Sponsor
Partners Sponsor
Become a Sponsor
For questions or for more information about Sponsorship and Ad Opportunities, please call 212-868-1573 x102 or email events@debra.org.
Press & Media
For press & media inquiries for the 2024 debra of America Benefit, please email events@debra.org.
Questions?
Please email events@debra.org or call 212-868-1573 x102.
Related Resources
Our Mission
“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization.
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Donate
Make a tax-deductible gift that directly impacts the thousands living with "the worst disease you've never heard of."
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Video Stories
See Epidermolysis Bullosa (EB) up close and personal in the video stories of individuals impacted by EB.
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