Rare Disease Day 2019

Rare Disease Day Feb. 28, 2019

WHAT IS RARE DISEASE DAY?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare disease and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.

Learn more about Rare Disease Day here.


WHAT CAN YOU DO?

Plan a Supporter Led Event | Join thousands of supporters from across the globe to organize an event within your community to raise awareness and funds. Host a pasta night, bake sale, raffle, or community walk! Contact Jason at jason [at] debra [dot] org to learn more.

Create an Online Fundraiser | Make a direct impact on the lives of those with EB by raising funds with Facebook or our easy-to-use DIY platform .

Share your story | Be a part of our ongoing Community Spotlight blog series covering a variety of topics relating to life with EB. Our last batch was on balancing care, a social life, and higher education as a college student with EB. You can check those out here. Please email Jeanette and jeanette [at] debra [dot] org if you are interested.

Spread the word on social media | Add the official Rare Disease Day Facebook frame and Twibbon to your profile pictures! You can also get involved with Rare Disease Day’s #ShowYourRare interactive social media campaign. Learn more here. Don’t forget to use the hashtags #ShowYourRare and #WeFightEB in your posts!

Take part in Rare Disease Week on Capitol Hill | Join our Government Affairs team at Rare Disease Week events through our partners at the Rare Disease Legislative Advocates (RDLA) and the National Institutes of Health (NIH)! For more info on how to participate in Rare Disease Week on Capitol Hill, please email Joe at joe [at] debra [dot] org.

Begin the steps to get an official proclamation for National EB Awareness Week in your town, city, or state | Proclamations are the official recognition that your town, city, or state office recognizes the serious nature of this condition and cares about its residents with EB. Although EB Awareness Week is not until October, it may take several months for the officials to process your request – start now to ensure National EB Awareness Week is recognized in your town, city, or state for 2019! Learn how to request an official proclamation here.

Go beyond Rare Disease Day | Join the debra Impact Network, which provides opportunities throughout the year for people directly affected by EB to help better the lives of all those suffering from EB. Learn more here.

Make a donation | Click here to make a donation in honor of Rare Disease Day.


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