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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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Living with Lowes

HLRCC Family Alliance

LAM Action

Living Beyond a Diagnosis

Cystinosis Foundation UK

MLD Foundation

CDKL5 UK

Ben's Friends

Kirsty's Cause

Bone Cancer Research Trust

PVNH Support & Awareness

PID UK

You are here: Home / About RDUK / What we do

What We Do

Campaigning for a UK Strategy for Rare Diseases

Since June 2009, our main remit has been to campaign for the development and implementation of an effective strategy for rare diseases in the UK. It is vital that this strategy is comprehensive and fully reflects the needs of the rare disease community.

For further information on a UK strategy for rare diseases please click here.

Capturing the experience of the rare disease community to inform policy

In order for RDUK to accurately reflect the needs of the rare disease community in our policy 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

RDUK works on behalf of all our members to ensure that the voice of the rare disease community is heard by all four governments and health departments of the UK. We do this by responding to relevant policy consultations, meeting with appropriate decision makers and politicians, and participating in policy forums.

For more information on our policy work, please click here.

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, and working with the media to raise awareness of rare diseases.

For more information on living with a rare disease, please click here.

For more information on Rare Disease Day please click here.

Supporting the rare disease community

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

For more information on how to get in touch please click here.