About Rare Disease UK

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.

Rare Disease UK is focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

Rare Disease UK is a campaign run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions.

What We Do

CAMPAIGNING FOR THE IMPLEMENTATION OF THE UK STRATEGY FOR RARE DISEASES

Since June 2009, we have campaigned for the development and implementation of an effective strategy for rare diseases in the UK. We believe that patients affected by rare disease should receive the high quality services, treatment and support they need.

The UK Strategy for Rare Diseases was published in 2013.

CAPTURING THE EXPERIENCE OF THE RARE DISEASE COMMUNITY

In order for Rare Disease UK to accurately reflect the needs of the rare disease community in our work, we carry out activities to capture the experiences of those living with, or working in the field of, a rare disease. This includes conducting surveys of patients and families, consulting with our members and a wider audience on the issues that affect them, and holding meetings, workshops and conferences to provide the opportunity to gather evidence and collect opinions.

Providing a united voice for the rare disease community

Rare Disease UK works on behalf of all our supporters to ensure that the voice of the rare disease community is heard by all four governments and health departments of the UK. Our Patient Empowerment Group is a key tool in ensuring that there is a representative, informed and unified voice for the rare disease patient community in the implementation of the UK Strategy for Rare Diseases. 

PROVIDING A UNITED VOICE FOR THE RARE DISEASE COMMUNITY

RAISING THE PROFILE OF RARE DISEASES

To ensure that the impact of rare diseases is fully recognised, we work to increase public and professional knowledge of rare diseases and demonstrate the effect that these conditions can have on the patients and families living with them. This includes carrying out surveys of patients and families, coordinating Rare Disease Day in the UK, providing our supporters with the tools to lobby their local representative, and by working with the media to raise awareness of rare diseases.

Supporting the Rare Disease community

We have accumulated a vast knowledge base on our interactions with patients, families, carers and patient organisations and are happy to help anyone with a query on rare diseases.

 

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