What is Rare Disease Day?

Rare Disease Day is a global event that aims to raise awareness of rare diseases. It is officially held on the last day of February each year, and recognised in over 90 countries worldwide.

A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population.

There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in medical literature each week.

Individually rare disease are uncommon but collectively they affect many people. In the UK it is estimated that 3.5 million people will be affected by a rare disease at some point in their lives.

Unfortunately, the reality of rare disease patients is challenging, many experience delays in getting an accurate diagnosis, receive poorly coordinated care and face difficulties accessing appropriate information.

To find out more information on rare diseases and what Rare Disease UK are doing to improve the rare reality, please visit our main website.

Find out more about rare diseases