How Are You Helping To Spread Awareness?

Rare Disease Day is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.1

 Although rare diseases are individually rare, they are collectively common, with 1 in 17 people being affected by a rare disease at some point in their lifetime. In the UK this amounts to over 3.5 million people.2 Rare diseases can be both life-limiting and life-threatening, and disproportionately affect children – 75% of rare diseases affect children and more than 30% of children with a rare disease die before their fifth birthday.2 

People with rare diseases and their families face a lifetime of complex care, and living with a rare disease can also have a huge impact on the person’s education, financial stability, mobility, and mental health. It is essential that the voice of rare disease patients is included when developing wider policy.2

Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives, and the general public can come together and participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.

On this rare disease day, join the movement to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families, and carers.


Visit to see how you can get involved.

1. What is Rare Disease Day? Available at: Accessed on February 2022.
2. The UK Rare Diseases Framework. Available at: Accessed on February 2022.