Rare Diseases Day is an awareness day the takes place on the last day of February each year.
The day seeks to raise awareness about the impact rare diseases have on people’s lives. While the campaign is primarily targeted towards the public, it also seeks to raise awareness amongst industry representatives, policy makers, public authorities, researchers and health professionals.
Rare Diseases Day launched in 2008, and since then thousands of events have taken place all over the world, resulting in increased media coverage of rare diseases and the advancement of national plans and policies for rare diseases in several countries. The awareness day started as a European event with the USA joining in 2009, and by 2015 over 80 countries participated.
In the UK
In the UK, Rare Diseases Day will be marked in different ways. There will be parliamentary receptions in England, Scotland, Wales and Northern Ireland. The Northern Ireland Rare Diseases Partnership are holding a conference looking at patient voice and empowerment, and in Wales the Rare Project are showcasing a photography exhibition at several events around Rare Diseases Day.
If you’d like to find out more about Rare Diseases Day, take a look at their website and watch the 2016 campaign video below.