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Friday, 31 January 2014

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 

Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

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