Question reference: S6W-08219
- Asked by: Martin Whitfield, MSP for South Scotland, Scottish Labour
- Date lodged: 26 April 2022
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Current status: Answered by Maree Todd on 10 May 2022
Question
To ask the Scottish Government how much funding it has made available for the creation and implementation of its Rare Disease Action Plan in (a) the current financial year and (b) each of the last five years.
Answer
The Scottish Government has made £100,000 available for 2022-23 for tests-of-change to improve care co-ordination for people living with rare diseases.
Our Bridge to a Scottish Genomics Strategy project focused on expanding our genomics capabilities to support the diagnosis and treatment of rare and inherited disease. This was a key programme for government commitment for 2017-18, and £4.2 million was made available to NHS National Services Division over 2018-19, 2019-20 and 2020-21. A further extension of the Bridge was agreed in 202-/22 with a further £2.3 million made available.While the work of the Bridge has concluded, we have announced a significant increase in the genomics budget for 2022-23, rising to £6.2 million. This funding will support the sustainability of the successes from the Bridge as well as expanding our genomics capabilities further into cancer.
Furthermore, the Scottish Government has made available over £600,000 since 2019-20 to Public Health Scotland for the development of the Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland (CARDRISS). A further £169,000 will be provided for 2022-23. The registry will become operational in this financial year. Discussions are ongoing with Public Health Scotland in expanding the registry’s functionality to support our wider endeavours for rare disease.
While the above sets out discreet funding to support those with a rare disease, many of our wider health priorities will equally contribute and deliver improved care for those living with a rare disease.