Facing a Rare Disease

February 28 marks Rare Disease Day. For many families facing a rare disease, such as epidermolysis bullosa, it can be as taxing physically and emotionally on caregivers as it is on those diagnosed. Rare Disease Day is an international day of awareness established to educate those in the medical field, those in media, and those who create and enforce public policy that can directly impact these families.

As with previous years, Rare Disease Day 2015 will be comprised of campaigns across the globe intent on reaching hundreds of thousands of people and generating media buzz to be capitalized on by bloggers, tweeters, and interactive Facebook communities like ours in this era of social media and grassroots campaigning.

Although Rare Disease Day started in Europe in 2008 by EURORDIS and the Council of National Alliances, it has grown into a collaborative international effort worldwide connecting health professionals, legislators, researchers, and those in industries serving rare disease communities such as the EB community. Last year, a new record-high 84 countries participated in the awareness day.

For many families facing a rare disease, much of the battle is locating support resources, and accurate, timely health information. Some helpful sites focused primarily on providing relevant information about thousands of rare disease, such as EB, include:

For more information about Rare Disease Day or to see what related events may be taking place near where you live, visit www.rarediseaseday.org/. If you have been planning your own event to reach area media on the designated date, make certain to post it at the Rare Disease Day site so others can come out to support your campaign.