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Parliamentary debates and questions

S5W-17131: Miles Briggs (Lothian)

Scottish Conservative and Unionist Party

Date lodged: 8 June 2018

To ask the Scottish Government how its work in implementing the UK Strategy for Rare Diseases will help patients with the genetic condition, 22q11.2 deletion syndrome, also known as DiGeorge syndrome.

Answered by: Shona Robison 19 June 2018

The Scottish Government is fully committed to empowering people in terms of their health and social care. In 2014 the Scottish Implementation Plan “It’s Not Rare to Have a Rare Disease” was published.

The Rare Disease Implementation Oversight Group was created in order to monitor the progress implementation of the plan, and to ensure that the 51 Commitments in the UK Strategy for Rare Diseases are being met. On 28 February 2018, the group published the Rare Disease Scotland Progress Report. The report provides an update on the work being undertaken in Scotland, that will help improve the lives of people living with rare and genetic conditions, including DiGeorge syndrome.

The report is available on the Scottish Government website:

It also co-incides with the second progress report from the UK Rare Disease Policy Board on the UK Rare Disease Strategy: