The Scottish Parliament Cross-Party Group on Rare, Genetic and Undiagnosed Conditions2019-05-10T11:54:53+01:00

What is a Cross-Party Group?

Cross-Party Groups (CPGs) provide an opportunity for Members of Scottish Parliament (MSPs) of all parties, outside organisations and members of the public to meet and discuss a shared interest in a particular cause or subject.

Genetic Alliance UK provides the Secretariat to the Cross Party Group on Rare, Genetic and Undiagnosed conditions in the Scottish Parliament.

What is the purpose of the CPG on Rare, Genetic and Undiagnosed Conditions in the Scottish Parliament?

  • 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 in Scotland.
  • 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.

What has the CPG worked on so far?

On 5 February 2019, the CPG met to discuss European Reference Networks (ERNs) and the importance of raising awareness of rare, genetic and undiagnosed conditions within the clinical community.

Minutes for the meeting on 23 April 2019 will be made available once they have been published.

For minutes of meetings before 2019, see the Scottish Parliament page on the CPG.

For more information contact Natalie Frankish, Policy and Membership Engagement Manager for Scotland, at [email protected].

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