Rare Disease Day
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level
A brief history
February 29th 2008, a "rare day", was the First Rare Disease Day in Europe, organised by EURORDIS. For the first time patient groups from different countries and representing a variety of diseases collaborated on a large-scale awareness-raising campaign in favour of rare diseases. In addition Eurordis' Council of National Alliances, 15 national alliances from Belgium, Bulgaria, Canada, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, the Netherlands, Romania, Spain and Sweden as well as patient organisations from the UK, Portugal and Finland organised walks and press conferences to raise public awareness of rare diseases, planned fundraisers, and wrote en masse to government representatives as well as health-related non-profit organisations. Denmark and Sweden received the patronage of their royal princesses whilst Germany, Italy, Hungary and Greece secured the active support of their First Ladies. Many more patient representatives and other stakeholders from as far as Russia and Ukraine joined in to create a truly "rare day for very special people".
For the second Rare Disease Day in 2009 EURORDIS, in conjunction with 19 rare disease national alliances, built on the success of the previous year with new partners from the US, China, Australia, Taiwan and Latin America joining in the action. For the first time the US participated through The National Organization for Rare Disorders (NORD) who mobilised more than 200 patient organisations generating great enthusiasm on that side of the Atlantic. Highlights included: the first march for rare diseases in Austria; lectures to generalise basic knowledge of rare diseases on university campuses in China; the projection of a documentary film made by a young filmmaker suffering from a rare disease in Romania; a fundraising event in favour of families affected by rare diseases in Taiwan; a display of ra