On 27th February I hosted a reception in Parliament to mark Rare Disease Day 2013. The event saw the launch of an important new report ‘Rare Disease care coordination: delivering value, improving services’.
The report – and a number of really touching speeches from people suffering from rare diseases and their doctors – highlighted how vital it is to give people suffering from rare diseases access to a care coordinator; someone to help them navigate the maze of multiple appointments, make sense of medical jargon, and give them the help and support they and their families badly need. Such coordinators not only greatly improve patients experience and care, they also save money by reducing the length of hospital stays and helping prevent unnecessary admissions.
You can read more about rare diseases and the campaign for care coordinators on Rare Disease UK website.
