Rare Disease Day 2016
WHAT IS RARE DISEASE DAY?
Monday, February 29, 2016 marks the 8th 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?
- Sign up for debra of America's Email Newsletter.
- Organize and host a debra of America Supporter Led Event in your community on Monday, February 29. They’re fun and easy – anyone can do it! Click here to learn how.
- Shop for Rare Disease Day at our online store.
- Help spread EB Awareness! Print and pass out our debra of America Brochure in your community.
- Share your EB to ME with us! Click here to read what people have shared.
- Have an idea? Email events [at] debra [dot] org and tell us!
What is debra of America?
The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), 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.