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Find out about our Rare Disease Day 2016 events here

Progress report from the UK Rare Disease Forum published here


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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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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 health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with these conditions have equitable access to effective services.

Key features of the UK Strategy for Rare Diseases, which was published in November 2013, include: 

  • making sure patients and their families and carers have the information they need, are listened to and consulted
  • developing better methods of identifying and preventing rare diseases
  • improving diagnosis and earlier intervention for those with a rare disease
  • developing better coordination of care for those with a rare disease, including joined up consultation and treatment schedules
  • building on research to improve personalised approaches to healthcare for those with a rare disease

To achieve the UK-wide vision for rare diseases, there are 51 recommendations which all four countries of the UK have committed themselves to.

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.

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.