One of the days in the year that is most important to us, and one that we are proud to support, is Rare Disease Day. Sarcoma is considered a rare disease and by raising awareness of all rare diseases, we hope to encourage the need for research and funding.
Last year EDDF co-founder Zanetta Davis spoke about sarcoma on Rare Disease Day at the Texas State Capital. This video shows some photos from that rally.
So, what is Rare Disease Day, you ask? This year, Rare Disease Day falls on February 28, 2014 and this is the 6th anniversary of the awareness day. Every year Rare Disease Day is on the last day in February. European Rare Disease Organization (EURODIS) first started it in Europe in 2008 and in 2009 it moved to the US. EURODIS invited National Organization for Rare Disorders (NORD) to team up and spread the word about Rare Disease Day in the US. Last year, more than 70 countries participated in Rare Disease Day and hopefully we have even more in 2014.
The ultimate goal of Rare Disease Day, which we believe hits milestones every year, is to raise awareness and attention of rare diseases. We want it to be treated as a public health issue that is not overlooked.
The slogan of NORD is “Alone we are rare. Together we are strong.” For someone facing a rare disease those words could not be more true. Imagine receiving a diagnosis of a rare disease and finding out there are just a handful of people who have had it and very little research. Sadly, that’s the case for so many people. That’s a hopeless feeling that these rare disease organizations are trying to change.
In an effort to promote awareness of rare diseases, here are a few facts (courtesy NORD). We ask that you tell at least 1 person about this day and please share at least 1 of these facts with them. Ask them to spread the word.
- In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans.
- There are approximately 6,800 such diseases, according to the National Institutes of Health (NIH).
- While each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people.
Would you like to get involved in Rare Disease Day? Click this link and select “Events Around the World” (halfway down page). Choose US (or your country, if different) and see what’s happening in your area.
Below is the official video for Rare Disease Day.