EVENT DATE: Nov 04, 2012
Dystrophic Epidermolysis Bullosa Research Association of America, Inc. wrote -
Run through all 5-boroughs of New York City in the world’s largest marathon - and make a difference raising money to support the Dystrophic Epidermolysis Bullosa Research Association (DebRA), the only national not for profit that supports the research for a cure and treatments for, while providing services and programs to those who suffer from, Epidermolysis Bullosa (EB).
EB is a devastating and sometimes fatal rare genetic condition that affects 1 out of every 50,000 live births. Patients with EB have skin so fragile that any rubbing, friction or slight trauma can cause severe blistering and sores - inside and outside their bodies.
- The cost of specialized bandages can exceed $10,000 per month
- Of those born with EB in 2010, 21% are no longer with us
- EB children may have as many as 6 surgical procedures a year just so they can swallow
There is NO cure and the only treatment is wound care, bandaging and pain management.
Some of DebRA’s services include:
• EB Nurse Educator, who manages more than 3,000 inquiries annually, provides medical expertise, referrals and directs patients to available resources.
• The Wound Care Clearinghouse that provides free medical supplies to patients.
• The Family Crisis Fund that offers financial assistance to families to help alleviate the hardship of unreimbursed medical costs.
DebRA's mission is to alleviate the inherent daily stress of living with "the worst disease you've never heard of."
until there’s a cure…there’s DebRA