Letters Care of rare diseases

Transfer of high cost drugs to NICE risks fragmentation of care of rare diseases

BMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e5727 (Published 24 August 2012) Cite this as: BMJ 2012;345:e5727
  1. Chris J Hendriksz, clinical lead and consultant transitional metabolic medicine1
  2. On behalf of D A Hughes, A B Mehta, J E Wraith, S E Jones, U Ramaswami, P Deegan, R Lachmann, E Murphy, T Hiwot, S V Vijay, F Stewart, M Cleary; Society for Mucupolysaccharide Diseases, Association for Glycogen Storage Disease (UK), Gauchers Association, Niemann-Pick Disease Group (UK)
  1. 1Salford Royal NHS Foundation Trust, Clinical Science Building B105, Salford M6 8HD, UK
  1. chris.hendriksz{at}srft.nhs.uk

It seems like déjà vu for those affected by rare diseases, and once again political change is to blame. Only two years ago the chief medical officer stated: “Services for those with rare diseases are fragmented and often poorly coordinated.”1

Commissioning of services for conditions individually affecting only 10% of the population presents challenges to value, fairness, and equity. Since 2005 the establishment of a UK National Commissioning Group for Rare Disorders (latterly National Specialist Commissioning Team) and Advisory Group for National Specialised Services …

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