debra of America Epidermolysis Bullosa Annual Benefit

 

Saturday, October 26, 2024 | 6:00 - 10:00 PM 
SoFi Stadium | Los Angeles, California

The 2024 debra of America Benefit will be held on October 26, 2024 at SoFi Stadium in Los Angeles. Join us in a new location as we honor those in the Epidermolysis Bullosa (EB) Community, champion our ongoing mission to advance EB research and patient care, and celebrate more hope on the horizon for the countless individuals and families affected by EB. 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.

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debra of America Benefit Photos

 

debra of America Annual Benefit Epidermolysis Bullosa

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. 

Thank You to Our Generous Sponsors


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.

SoFi Stadium

 

Related Resources

Infant with EB 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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Young Boy with EB 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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Ella Video Stories

See Epidermolysis Bullosa (EB) up close and personal in the video stories of individuals impacted by EB.

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