Rare Disease Day 2017

Rare Disease Day Feb. 28, 2017

WHAT IS RARE DISEASE DAY?

Rare Disease Day, coordinated by EURORDIS, takes place on the last day of February each year. With over 80 countries around the world participating, the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Tuesday, February 28, 2017 marks the 10th international Rare Disease Day. This year’s theme is research as it is a source of hope for millions of people living with a rare disease across the world and their families.

[Source: rarediseaseday.org]


WHAT CAN YOU DO?

  • Organize and host a Supporter Led Event in your community, whether it’s a bake sale, a 5k run/walk, or a dress-down day at your office – we’re here to help you every step of the way! Click here to learn more.
  • Crunched on time? Create an Online Personal Fundraiser with our user-friendly DIY personal fundraising platform and ask your friends & loved ones to donate in honor of Rare Disease Day. Click here to get started.
  • Spread Epidermolysis Bullosa (EB) awareness on your social media accounts by downloading and posting our easy-to-use “Social Media Shareables” found here.
  • If you are an individual living with EB, you can enroll in current clinical trials to help further research for treatments and a cure. Learn about active clinical trials by clicking here.
  • Shop for Rare Disease Day at the debra Shop.
  • Sign up for debra of America’s Email Newsletter.
  • Have an idea? Email staff [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.

Girl with EB