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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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1 in 17 people will be affected by a rare disease at some point in their life. (European Council)

This amounts to approximately 3.5 million people in the UK.

75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. (EURORDIS)

There are over 6,000 recognised rare diseases.

Collectively rare diseases are not rare.

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

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 UK rare disease strategy would coordinate:

  • Research
  • Prevention, diagnosis and screening
  • Treatment
  • Care and support
  • Information for patients and professionals
  • Commissioning and planning of rare disease 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. For further information on a strategy for rare diseases please click here.

If you are interested in supporting our campaign, please read more about joining RDUK. Our membership is open to all and includes patient organisations, clinicians, researchers, academics, industry and individuals with an interest in rare diseases. Membership is free to everyone except industry.

Follow RDUK on Twitter @rarediseaseuk