D O N A T E Login Sponsors Clinical Trials Shop Volunteer Español Social Media Contact UNDERSTANDING EB ABOUT PROGRAMS/SERVICES FAMILY CENTER TAKE ACTION EVENTS Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™ Understanding EB You are not alone. debra of America has been helping families like yours since 1980. Get support now Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder, affecting 1 out of every 20,000 live births. There are many variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. There is no cure. Download the debra EB Brochure Sign up here for the first EBCare Patient Reported Registry — a resource for individuals and families affected by all forms of Epidermolysis Bullosa (EB) and qualified researchers. The confidential information collected is used to promote research, support policy initiatives and increase awareness. 2nd Annual Mats Wilander Tennis Pro-Am on August 27 at The West Side Tennis Club SPONSOR A COURT NET BANNER Save The Date! 16th debra of America Benefit on October 22 in New York City BECOME A CASINO SPONSOR Run The 2014 NYC Marathon for Epidermolysis Bullosa Please Join Us To Help The EB Community 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. Shop for EB 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. Debra's 2014 Patient Care Conference July 30 - August 2, 2014 LEARN MORE Upcoming Events Please mark your calendars and join us at one of our fundraising events across the country. For more information email us. INTERNATIONAL EVENTS February 28, 2015 International Rare Disease Day NATIONAL EVENTS October 25-31, 2014 (Nationwide) EB Awareness Week DEBRA HOSTED EVENTS 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 LOCAL EVENTS August 24, 2014 (Dallas, TX) One Direction Concert #ButterflyProject September 14, 2014 (New York, NY) The Art Studio NY 10-Year Anniversary September 20, 2014 (Lore City, OH) First Annual Butterfly 5K Saturday, October 25th (Knoxville, TN) First Annual Knoxville 5k PERSONAL FUNDRAISING PAGES Visit Local Events and Debra Hosted Events for details. E-News Sign Up Featured EB News Story Read about our 2014 Spirit Award Winner in the NY Daily News 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. Donate Now Click to Donate Home Understanding EB About DebRA Family Center Take Action Shop Announcements Events DEBRA International En Español Contact DebRA Site Map News Photos Privacy Policy To all our donors, sponsors, and friends: Thank You! © Copyright 2014, Debra of America, All Rights Reserved | Debra of America is a registered 501(c) 3 tax exempt organization. | All Trademarks and Brands are Property of Their Respective Owners Debra does not endorse any drugs, tests, or treatments that we may report. This website is for informational purposes, always check with your physician before adopting any medical treatment. | CFC#: 11990