Ideally, Rare Disease Day would happen on February 29th every year ... but for some reason that's impossible. However, it will happen on February 29th this year (because it's a leap year). Next year we'll have to make do with boring old February 28th!
The 2016 global theme, “Patient Voice,” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. Watch the video here.
Rare Disease Day is organized - worldwide - by EURORDIS, and is now observed in more than 65 nations. The first Rare Disease Day was held in 2008, and here in the US Rare Disease Day is officially coordinated by the National Organization for Rare Disorders (NORD), but the coalition supporting Rare Disease Day includes multiple patient organizations, the NIH and other government entities, medical researchers, hospitals and schools, universities, pharmaceutical companies developing treatments for rare diseases, and many others.
How can you get involved?
At the most basic level you can participate in the Handprints Across America project or log into the tweetchat being coordinated by NORD in association with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit, and use the hashtag #abcDRBchat in all of your tweets to be a part of the conversation!
You could decide to support participants in the three Running for Rare teams this year (at the Boston Marathon, the Providence Marathon and Rhode Races, or the TCS New York Marathon).
Or you could turn out at one of the State House events being held at almost every state capitol around the country this year around Rare Disease Day. Dates vary from state to state because they have to be held when legislators are actually going to be in town, but if you sign up to join the Rare Action Network, you can find out what will be happening at your state capitol on or around Rare Disease Day. For example, in Pennsylvania we are hoping to be able to announce the formal formation of a first of its kind Rare Disease Caucus within the state legislature when we meet in Harrisburg on March 16th.
A whole list of other possible ways you can participate appears here on the Rare Disease Day web site.
You don't have to donate to NORD or become a NORD member to work with us on Rare Disease Day or at other times of the year (but of course that would be nice too!). The point of Rare Disease Day is to make sure we all work together in raising awareness about rare diseases and getting attention and help and constructive solutions to the problems faced by rare disease patients across America and around the world.
E. Michael D. ("Mike") Scott is a member of the Board of Directors and former Chairman of the National Organization of Rare Disorders