You can make a difference to the EB community by giving generously to help families attend the 2014 Patient Care Conference (PCC) to be held in Nashville, TN this summer. Your donation would help pay for families to attend an amazing four days of learning, support, and socializing for EB kids and their families. The conference is currently at capacity, which sets a conference record with almost 500 people registered to attend. Now more than ever, we need your support. While we continue our search for viable treatments and a cure, we will be there for those with EB and their families to lessen the burden of living with this terrible disease. Please donate now.
Visit the Debra Shop and help us spread EB awareness by purchasing one of our popular items, including the new "EB Wing of Roses" bracelet.
Download our Fundraising Form and sell debra merchandise in your community and at your next event.
July 30 - August 2, 2014
Updated July 17: Agenda and Kid's Room Schedule
Please mark your calendars and join us at one of our fundraising events across the country.
For more information events [at] debra [dot] org (email us).
DEBRA HOSTED EVENTS
- July 30-August 2, 2014 (Nashville, Tennessee)
Debra's 2014 Patient Care Conference
- Wednesday, August 27, 2014 (New York City)
2nd Annual Mats Wilander Foundation Tennis Pro-Am
- Wednesday, October 22, 2014 (New York City)
16th Annual Debra of America Benefit
- Sunday, November 2, 2014 (New York City)
2014 NYC Marathon
- March 2015 (New York City)
2015 NYC Half Marathon
- July 24-28, 2016 (Dallas, Texas)
Debra's 2016 Patient Care Conference
PERSONAL FUNDRAISING PAGES
Visit Local Events and Debra Hosted Events for details.
Dream comes true for Robbie Twible (debra's 2014 Spirit Award Winner), who hangs out with his heroes on Citi Field diamond. The 12-year-old, who suffers from rare skin disease, shared the infield with Mets sluggers David Wright and Curtis Granderson as they took batting practice before their clash with the Los Angeles Dodgers on Thursday.
Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects 1 out of every 20,000 live births and those born with it are often called ‘Butterfly Children’ because as the analogy goes, their skin is as fragile as the wings of a butterfly. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available. Click to learn more.