DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.
|The mounting cost of bandages is most often not covered by an EB family's health insurance.||89.4¢ of every dollar donated goes directly to EB patients, families, and research.|
Rare Disease Day® 2013
February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 24 European countries.
On and around this day hundreds of patient organizations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”. Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!
ANNOUNCING THE OFFICIAL DebRA "I-FIGHT" T-SHIRT!
Show your support for DebRA of America by wearing our brand new, super-soft and comfortable "I FIGHT" T-Shirt. Click here to order today and receive FREE SHIPPING.
• Features the official DebRA tagline: I FIGHT — The Worst Disease You've Never Heard Of.™
• Printed inside-out, so the seams and label won't touch your skin!
• Extremely soft, 100% combed ring-spun cotton jersey (90% cotton/10% poly)
• Pre-shrunk with a tear away satin label
• Perfect for friends, family and colleagues - and your next DebRA Local Event
Click here to buy today to spread #EBAwareness and help raise funds for DebRA of America.
What is DebRA of America?
The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago in New York City and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) —The Worst Disease You've Never Heard Of.™ Some of the programs and services we provide are; wound care supplies shipped directly to patients, an EB Nurse Educator, education, new family packages, and money for research towards finding a cure for EB. There is currently no cure, and the research is on-going. Treatment is supportive and includes daily wound care, bandaging, and pain management. For more information, click here.
What is EB?
Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to be so fragile that the slightest friction can cause severe blistering - inside and outside the body. It is present in 1 out of every 50,000 live births in the US. It can occur in every racial and ethnic group, and affects both sexes equally. There is currently no cure, and the research is on-going. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal. Click here to learn more.