Rare Disease Day takes place on 28th February . This is a global awareness campaign advocating for fairness in social opportunity, healthcare and access to diagnosis and treatments. It is organised by EURODIS and 70 national patient alliances aiming to raise awareness of the 300 million people worldwide living with a rare disease. It invites families, carers, policy makers, industry, clinicians, researchers and healthcare professionals to make meaningful changes to improve the lives of people living with rare conditions.

In Ireland 1 in 17 people live with a rare disease. The Leinster tauopathy study estimated that there were approx 300 people in Ireland living with PSP/CBD.