Project: Rare Disease UK

The National Alliance for people with rare diseases and all who support them

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We were established by Genetic Alliance UK in conjunction with other stakeholders in response to the unmet healthcare needs of the millions of people in the UK living with a rare disease and who currently struggle to get access to integrated care and support from the NHS.

We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

Our membership is open to all and includes patients and families, patient organisations, clinicians, academics, researchers and industry. RDUK is campaigning for the Health Departments across the UK to develop a strategy for rare diseases to ensure that patients and families living with these conditions have equitable access to effective services. A cohesive, well-implemented strategy for rare diseases would improve the health and quality of life of those living with a rare condition, as well as ensuring the most effective use of NHS resources. Our other areas of work include:

  • Capturing the experience of the rare disease community to inform policy
  • Providing a united voice for the rare disease community
  • Raising the profile of rare diseases
  • Supporting the rare disease community

For further information, please see our website www.raredisease.org.uk or contact us on .

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