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Rare Disease Implementation Plans for England Published

01 February 2018

We are pleased to read a summarised report of the plan by Contact, which highlights the following:

Of particular interest to families will be the plans to improve diagnosis and reduce the amount of time and the number of healthcare professionals a family has to see. 

Currently on average it can take up to four years to get a diagnosis with the average number of misdiagnoses being three, leading to delays in accessing potential treatments and therapies.

The plans also set out to improve the coordination of care and aims to improve access to a care coordinator who can provide families with support and coordinate hospital appointments. The plan also includes measures to improve the transition process to adult services and ensure that families are properly supported.

You can read more from Contact in their report, here.

You can access the full implementation plan for England, here.