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The Westminster all party parliamentary group on rare, genetic and undiagnosed conditions

The Cross Party Group (CPG) on Rare, Genetic and Undiagnosed Conditions provides an opportunity for Members of the Scottish Parliament (MSPs) of all parties to meet and discuss the challenges people living with rare, genetic and undiagnosed conditions in Scotland face.

Genetic Alliance UK provides the Secretariat for the CPG.

Patient organisations that support people living with rare, genetic and undiagnosed conditions in Scotland may also be members of the group, and people living with a rare condition in Scotland may attend meetings as an observer.

 

Due to the 2021 Scottish Parliament Elections, from midnight on 24 March 2021, the CPG will cease to exist. Following the election, Genetic Alliance UK will seek to re-register the CPG.

Cross Party Group Report: ‘Improving Care for Rare Conditions in Scotland’

On 23 March 2021, the Cross Party Group published the ‘Improving Care for Rare Conditions in Scotland’ report.

The report provides a narrative of experiences raised with the Cross Party Group in the 2016-2021 parliamentary session and outlines what is needed to increase awareness of rare conditions among healthcare professionals and to improve coordinated care in Scotland.

‘Improving Care for Rare Conditions in Scotland’ calls for the development of a funded Rare Conditions Coordination Service for Scotland.

The report is intended to inform implementation of the UK Rare Diseases Framework and the development of the new Scottish Action Plan for Rare Diseases.

 

MEMBERSHIP

During the 2016-2021 parliamentary session, Bob Doris MSP, Mark McDonald MSP and John Scott MSP were co-conveners of the CPG. Genetic Alliance UK provided the Secretariat for the group.

Due to the 2021 Scottish Parliament Elections from midnight on the 24 March 2021, the CPG will cease to exist and there will not be an active membership of the group.

Following the election, Genetic Alliance UK will seek to re-register the CPG.

If you would like to join the CPG as a new member in the new parliamentary session, please contact [email protected]create new email

WHAT HAS THE CPG WORKED ON?

During the 2016-2021 parliamentary session, the CPG has considered a number of issues raised by the rare, genetic and undiagnosed community in Scotland. These include:

● Lack of coordinated care for rare conditions
● Raising awareness of rare, genetic and undiagnosed conditions with health professionals in NHS Scotland
● Improving diagnosis of rare conditions
● European collaboration and the role of European Reference Networks
● Impact of Covid-19 on people living with rare, genetic and undiagnosed conditions in Scotland
● Access to medicines for rare conditions

Minutes of meetings from the 2020/2021 parliamentary session can be downloaded here:

26 May 2020 – Covid-19 Impact on people living with rare, genetic and undiagnosed conditions (Q&A with Professor Jason Leitch, National Clinical Director for the Scottish Government).
DOWNLOAD MINUTES

28 October 2020 – Covid-19 Impact on people living with rare, genetic and undiagnosed conditions (Presentation of ‘The Rare Reality of Covd-19’ report, Nick Meade, Director of Policy, Genetic Alliance UK).
DOWNLOAD MINUTES

25 November 2020 – Care Coordination (Presentation on the CONCORD Study, Emma Hudson and Professor Steve Morris).
DOWNLOAD MINUTES

27 January 2021 – Covid-19 vaccination programme.
DOWNLOAD MINUTES

3 March 2021 – The Future of Genomics in Scotland (Presentation by Professor Zosia Miedzybrodzka, NHS Grampian) and publication of the Cross Party Group report ‘Improving Care for Rare Conditions in Scotland’.
DOWNLOAD MINUTES

Minutes of meetings from 2017-2020 and full details of CPG membership can be found on the Scottish Parliament website.
DOWNLOAD MINUTES

Scottish Parliament

Contact the Scottish CPG on Rare, Genetic and Undiagnosed Conditions.

Genetic Alliance UK provides the Secretariat for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions.

 If you would like to know more about the group, attend a meeting or raise a topic for consideration by the CPG, please contact [email protected]create new email

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