F.I.R.S.T. will participate in a global Rare Disease Day on February 28th, 2009. As a Rare Disease Day Partner, we will join hundreds of other patient organizations, government agencies, medical societies and companies in focusing attention on rare diseases on that day.
This will be the Second Annual Rare Disease Day. The first was observed in Europe last year and was organized by EURORDIS, the European Rare Disease Organization, and the national alliances of rare disease patient organizations in each country.
This year, EURORDIS invited NORD, the National Organization for Rare Disorders, to organize a similar observance in the United States. Activities are also being planned in some other countries. The ultimate goal is to have a global Rare Disease Day on the last day of February each year.
The theme is that rare diseases are a public health issue, affecting millions of people around the world. As a Rare Disease Day Partner, F.I.R.S.T. has agreed to help publicize and promote Rare Disease Day.
Partners and their members are encouraged to work with their media contacts, post videos and messages online, share human interest patient stories, and nominate researchers to a Rare Disease Hall of Fame. Pins and bracelets with the Rare Disease Day logo will be available soon at cost to the members of Partner organizations.
In addition, all Partners and their members have been invited to write to their state governors to request that Feb. 28, 2009, be designated Rare Disease Day in the state. (A sample letter and resolution are posted on the NORD Rare Disease Day web page.)
Watch our website, or the following sites, for more information on these and other activities:
U.S. Rare Disease Day page on the NORD website: 
Global Rare Disease Day website: Global Rare Disease Day Website
