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.||86.4¢ of every dollar donated goes directly to EB patients, families, and research.|
Rare Disease Day® 2015
WHAT IS RARE DISEASE DAY?
February 28, 2015 marks the 7th 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 70 countries are planning awareness-raising activities making it the largest Rare Disease Day in history. Activities will take place across Europe, Asia, North America, and will stretch as far as Australia and New Zealand!
WHAT CAN YOU DO?
- Organize and host a Debra Supporter Led Event in your community on Saturday, February 28. They’re fun and easy – anyone can do it! Click here to learn how.
- Shop for Rare Disease Day at our online store. Our soft “I-FIGHT EB” t-shirts are printed inside out, so the seams and label won’t touch and scratch your skin!
- Help spread EB Awareness! Print and pass out our EB Brochure in your community at school, work, local businesses, and to friends and family.
- Have an idea? Email events [at] debra [dot] org and tell us!
- Share your EBtoME with us! Click here to read what people have shared.
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, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available. Click here to learn more.