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 the US joining in 2009 and patient organisations in 56 other countries participating in 2011. We hope many more will join in 2012. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day.

A brief history

2008

February 29, 2008, a "rare day", was the 1st Rare Disease Day in Europe, and organised by EURORDIS. For the first time patient groups from different countries 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 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.

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”.

2009

On 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 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 rare disease images in metro stations in Ukraine;
• an information day on rare diseases under the auspices of the Lord Mayor of Dublin.

just to mention a few.

2010

In 2010 the theme concentrated on the importance of rare disease research and the hope research represents for the millions of rare disease patients living without a cure.

Rare Disease Day 2010 highlighted the importance of collaboration between patients and researchers. In line with the 2010 theme, patient organisations were invited to nominate a scientist, who had helped advance research into their disease, to the Rare Disease Research Hall of Fame (40 nominations in all). View the highlights

2011

On 28 February 2011, EURORDIS member national alliances in 25 countries combined their efforts to spotlight 'rare diseases and health inequalities' and join around the slogan “Rare but Equal”. 2011 saw the arrival of 10 new countries to total 55 participating countries around the globe. In line with the theme, rare disease patients and family members sent in their stories of health inequalities.View the highlights