Rare Disease Day® 2014

Rare Disease Day Feb. 28, 2014

February 28, 2014 marks the 7th international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 24 European countries.

Organize and host a Debra Local Event in your community on Friday, February 28. They’re fun and easy – anyone can do it! Click here to learn how.

On and around this day hundreds of patient organizations from more than 70 countries and regions worldwide are planning awareness-raising activities making it the largest day in history. 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!

[Source: rarediseaseday.org]

Help us make our new EB Awareness Video, “Raise Your Hand for EB,” and become a star! Take a photo of you with your family raising your hands for EB awareness. Make sure to hold a sign with your city and state written in large, dark letters. Email the photo to events [at] debra [dot] org and it could be featured in our video!

Raise your Hand for EB Awareness - Rafi

Show your support for debra of America by wearing our super-soft and comfortable "I FIGHT" T-Shirt. Click here to order today.

• 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, 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.