Did you know that 300 million people in the world live with a rare disease?

A disease is rare when it affects fewer than 1 in 2,000 people. Examples of rare diseases include cystic fibrosis, Chron’s disease and sickle cell anaemia. 72% of rare diseases are genetics which means they can be hereditary.

Because they are rare, it can be difficult for people to get diagnosed quickly. For many rare diseases there isn’t a simple test, and Doctors need to rule out other more common illnesses first. For some conditions it is made more complex because symptoms can be similar to other conditions, or vary from patient to patient. Either way, this complexity can mean treatment is often delayed.

What's it like living with a rare disease?

People tell us that waiting for a diagnosis and then learning to live with a rare illness can be extremely stressful and often impacts peoples’ mental health and that of their families. The rarer the disease, the less support that is available from charities and support groups.

Today is Rare Disease Day

That’s why we are supporting Rare Disease Day today. In a leap year it is celebrated on February 29^th which is the rarest day of the year. It’s a worldwide event to raise awareness of rare disease and advocate for people who live with a rare disease every day.

If you would like to show your support for Rare Disease Day click here.