Rare Disease Day – February 29

Rare diseases are not as rare as people might expect them to be. Over 300 million people live with a rare disease worldwide, according to the Rare Disease website. That is one in every 20 people, so odds are that you know someone who is suffering from a rare disease. On Rare Disease Day, which takes place this year on the ‘rare’ day of February 29, people are invited to fundraise, share stories on social media, organise events or do anything else that will help raise awareness of people living with a rare disease and their carers.  

Rare Diseases

Over 6000 different rare diseases exist in the world and around 72% of these are genetic. Many of the diseases are not curable but there are treatments that help control the illnesses. Even with treatments, the daily lives of people with a rare disease are not easy and each individual is affected differently by the disease. 70% of the genetic rare diseases start in childhood and many people are not diagnosed or misdiagnosed, especially people who come from lower socio-economic backgrounds. 

What Can You Do?

The lives of many suffering from rare diseases would be made far easier if access to treatments and diagnosis would be more equitable. Petitioning for policymakers to make the necessary changes is a crucial step forward. Rare Diseases Day aims to make information about rare diseases more widely available to the general public, so something as small as using #RareDiseaseDay when sharing a story on social media helps. 

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