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UK CHIEF MEDICAL OFFICER'S 2009 ANNUAL REPORT PUBLISHED

This week saw the publication of Sir Liam Donaldson's 2009 Annual Report which includes a 7 page report on the current state of and recommendations for the management of rare diseases (like MEN).  Actions recommended include: strengthening the network of reference centres for rare diseases to enable better coordination of specialist services, including the transition from paediatric to adult services, and appointing a National Clinical Director for rare diseases to oversee the development of clear standards and pathways for the treatment and surveillance of rare diseases, with national registers to support service planning and delivery as well as research.  AMEND believes that the latter of these two recommendations is key to improving the care and management of rare diseases, but will it ever happen?  Let's hope so.  To read the full report, please go to http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/AnnualReports/DH_113912