Yesterday, February 28, 2013 was the 6th annual Rare Disease Day, first coordinated by EURORDIS and organized with rare disease alliances in 24 European countries. Over the next several days, awareness-raising activities are happening across the globe, from Europe to Russia, China to Japan, North America to New Zealand, Australia and more!
This year’s slogan is "Rare Disorders without Borders" and is explained on http://www.rarediseaseday.org to mean, “Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.”
In an age where information sharing is the norm and becomes easier with each passing nanosecond, this cross-border concept is an idea whose time has come. The site goes on to say, “Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6,000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.”
No matter which country new information, research and treatments originate, making these important strides available worldwide is a huge advancement in the physical and emotional health of those living with rare diseases, and who may feel as if they’ve exhausted the information available to them.
Even if you are lucky, healthy and don’t know anyone who’s told you that they live with a rare disease, there are still ways for you to help spread awareness and reduce isolation. Visit the Rare Disease Day website listed above; there you will find information packets, videos and other resources to get the word out, get involved and make life a little easier for people living with debilitating struggles unfathomable to the majority.
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