Scotland Cross Party 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.
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.
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
Take a look at the minutes from our previous parliamentary sessions.
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]