MAC-Team

Rare Disease World day 2014

rare disease day28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan "Join Together for Better Care".

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.rare-disease-470x110-web

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.


More info: www.rarediseaseday.org

What is a rare disease: www.rarediseaseday.org/article/what-is-a-rare-disease

Other source: EURORDIS - the voice of 30 million people affected by rare diseases throughout Europe

See as well the Event "ECRD 2014 - The rare disease puzzle"