Rare, Genetic And Undiagnosed Conditions

Purpose of the group

  • 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.

Forthcoming meetings

Next meeting:


Annual Return/Report

Group Officers

Group Members


Genetic Alliance UK - secretary and treasurer


Autoinflammatory Disease UK

PCD Family Support Group Scotland

Children’s Health Scotland

Hereditary Spastic Paraplegia (HSP) Support Group

PSP Association

Turner Syndrome Support Society

Brittle Bone Society

Sickle Cell and Thalassemia Support Group

Haemophilia Scotland

Behcet’s UK

Office for Rare Conditions (Scotland)

Action Duchenne

Primary Immunodeficiency UK (PID UK)

Ehlers-Danlos Support UK

NHS Scotland Laboratory Genetics Consortium

Clinical Genetics (NHS Tayside)

Get involved

Next meeting:




Cross Party Groups and GDPR

Please note that some Cross-Party Groups have external organisations that provide secretariat support to the Group. These organisations manage your information in compliance with the General Data Protection Regulation (GDPR) requirements. The links to the privacy policies, of the organisations that have provided them to the Scottish Parliament are available on our website.

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