Rare Disease Day

 

 

What?

Rare Disease Day takes place on the last day of February each year. The goal of Rare Disease Day is to raise awareness about rare diseases and their impact on patients' lives.

Our hope is that this awareness reaches policy makers, public authorities, industry representatives, researchers, health professionals and anyone who can have a larger impact in further improving the lives of those who suffer from rare diseases.

Why?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day hopes to spread knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

Where?

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 90 countries all over the world in both 2017 and 2018. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2019.

When?

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.