Rare Diseases

(asked on 6th January 2016) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what recent discussions he has had with his counterparts in the devolved administrations on the implementation of the Rare Disease Strategy.


Answered by
George Freeman Portrait
George Freeman
This question was answered on 14th January 2016

The implementation of the UK Rare Disease Strategy is monitored by the UK Rare Disease Forum which includes representatives from all the devolved administrations. The Forum will publish their first assessment of the progress made in implementing the UK Rare Disease Strategy at the end of February 2016.


The Rare Diseases Advisory Group (RDAG) makes recommendations to NHS England and the devolved administrations of NHS Scotland, NHS Wales and NHS Northern Ireland on developing and implementing the strategy for rare diseases and highly specialised services. The membership of RDAG also includes representation from the devolved administrations – NHS Scotland, NHS Wales and NHS Northern Ireland.


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