Rare Disease Day, taking place on 29 February 2024. A blue border with pink and green paint marks surround the text.
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The latest news from RARE DISEASE UK...

George’s Mast Cell Activation Syndrome story

Lois’s Poland syndrome journey

Care Coordination – Alison’s story

Jess’s Story

Mhairi’s story

Our work

We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.


Support us

We are the national campaign for people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

Anyone with an interest in rare diseases can become a supporter of Rare Disease UK. It is completely free to join for everyone other than industry.