The proposed Cross Party Group on Rare, Genetic and Undiagnosed Conditions met for the first time on Tuesday 28 March. We are delighted that Bob Doris (SNP MSP for Maryhill and Springburn) has agreed to serve as Convener of the group. Other MSP members include Miles Briggs (Scottish Conservative MSP for Lothian), Anas Sarwar (Scottish Labour MSP for Glasgow), and John Scott (Scottish Conservative MSP for Ayr). John Scott MSP and Anas Sarwar MSP will support Bob Doris MSP as Deputy Conveners of the Cross Party Group.
The MSPs were joined by a number of patient group representatives. It was agreed that Natalie Frankish, Policy and Engagement Manager for Scotland at Genetic Alliance UK will provide the Secretariat tothe group and act as Treasurer.
The Cross Party Group’s aims and purpose, as agreed during the meeting, are as follows:
- Act as a channel of communication between the Scottish Parliament and families affected by rare, genetic and undiagnosed conditions;
- Act as a channel of communication between the Scottish Parliament and those working in the fields of research, treatment, care and prevention of rare, genetic and undiagnosed conditions;
- Monitor and contribute to the implementation of the Scottish Plan for Rare Diseases;
- Identify areas where inequalities exist in provision of care for rare, genetic and undiagnosed conditions and campaigning for improvement;
- Examine areas of health and social care policy or service provision relating to rare, genetic and undiagnosed conditions.
We now have until Friday 21 April to confirm the full membership of the Cross Party Group and submit the formal paperwork to the Scottish Parliament’s Standards, Procedures and Public Appointments Committee.
We are asking patients and families affected by rare, genetic and undiagnosed conditions to contact their local MSP and ask them to join the Cross Party Group. We have created a letter template that you can edit and send to your MSP with information about how they can get involved. Click hereopens WORD file to download this document (in Word).
The Cross Party Group is also open to patient organisations. If a representative from your organisation would like to become a member, please contact Genetic Alliance UK’s Policy and Engagement Manager for Scotland on [email protected]create new email