EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

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