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Rare Disease 2020

What is Rare Disease Day?

Rare Disease Day is held every year on the last day of February. The day is coordinated by EURORDIS and aims to raise awareness of the impact that rare diseases have on the lives of those living with them.

Is PSC rare?

PSC is classed as a rare disease. The latest figures from the University of Birmingham show that PSC affects only around 80 people per million in the UK (prevalence of PSC) 23. Other studies suggest it is even lower at only 56 people per million 24. A disease is classed as rare if it affects less than 500 people per million (or less than 1 person in 2000), according to Rare Disease UK.

Challenges of living with a rare disease

There are many challenges that come with living with a rare disease. Often, rare diseases like PSC cause relatively common symptoms, which can go unnoticed. This means that rare diseases often take longer to diagnose or even get misdiagnosed. Once a rare disease is diagnosed, treatment options can be limited due to lack of scientific knowledge. This places a huge emotional and physical burden on patients and their families.

Invisible symptoms and lack of awareness and knowledge about rare diseases, makes it difficult for others to understand what people with rare diseases like PSC are living with on a daily basis. We are working to change this.

What we do

Improving the lives of people affected by PSC

How can Rare Disease Day make a difference?

'The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.' - EURORDIS

You can get involved and help raise awareness of rare diseases for the 300 million people living with them all over the world by sharing the Rare Disease Day graphics on social media.

We are the 300 million