2020 debra Care Conference
July 19-22, 2020

Mark your calendars! The 2020 debra Care Conference (DCC) is being held at the Omni Atlanta Hotel at CNN Center in Atlanta, Georgia from July 19-22, 2020 (with hotel stays until the 23rd). Registration opens January 2020!

21st debra of America Benefit
October 21, 2019

The 21st Annual debra of America Benefit held on Monday, October 21 at Tribeca 360° was a truly memorable evening. It would not have been possible without the support of our guests, sponsors, and honorees.

We want to congratulate our 2019 honorees: Lifetime Achievement Award honoree Al Lane, M.D., our Corporate Hero Award honoree, Jeffrey S. Aronin and our Partners in Progress Award honorees: Aegle Therapeutics, Amryt Pharma, and Lenus Therapeutics. The night was especially memorable as we heard very moving and poignant words from our two Spirit Award honorees, Hodges R. Caldwell, Jr. and Eli Meyer.

Proceeds from the Benefit go directly towards supporting people living with Epidermolysis Bullosa (EB), a painful, often fatal, and always debilitating rare genetic disease that affects 1 out of every 20,000 births in the United States. Those born with EB are often known as "Butterfly Children" for their extremely fragile skin.

Couldn't Attend? Click here to make a donation to support EB.

Join TEAM DEBRA in Events Across the Nation in 2019

TEAM DEBRA is for marathon runners, cyclists, and everything in-between. What unites TEAM DEBRA is our commitment to spread EB awareness and raise funds to find a cure and treatment for EB. Click here to learn more about TEAM DEBRA and to see the events we are partnered with.

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder in which children do not produce a vital protein to allow their skin to adhere to itself. 1 out of every 20,000 births in the United States are affected by the disease. Children with EB are often referred to as "Butterfly Children" because their skin is extremely fragile and can blister or tear from any friction. Internal organs can also be seriously affected by the disease. EB is painful, often debilitating, and is in some cases lethal. There is no treatment or cure. Daily wound care, pain management, and protective bandaging are the only options available. Click to learn more.