People with rare diseases need better care, says chief medical officer

BMJ 2010; 340 doi: (Published 16 March 2010) Cite this as: BMJ 2010;340:c1506
  1. Jacqui Wise
  1. 1London

    The chief medical officer for England has called for a national clinical director for rare diseases to be appointed and for the network of reference centres for rare diseases to be strengthened.

    A disease is considered rare when it affects fewer than five in every 10 000 people. There are more than 6000 rare diseases, and around three million people in England are affected by them, his annual report for 2009 says.

    Speaking at the report’s launch, Liam Donaldson said, “Services for those with rare diseases are fragmented and often poorly coordinated. While there have been significant improvements in diagnosing and treating children with rare diseases, the same is not true for adults. A particular problem is the transition from children’s care to adult services, which is often difficult.”

    Professor Donaldson …

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