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

Tuberous Sclerosis Association

Turner Syndrome Society

PNH Scotland

British Liver Trust


Action Duchenne

Funny Lumps

Fragile X Society

The Aarskog Foundation

CSF Leak Association

Behcet’s Syndrome Society


Office for Rare Conditions (Glasgow)

Family Fund

PCD Support Group for Scotland


Haemophilia Scotland

Get involved

Next meeting:


[email protected]



Bob Doris MSP

the Scottish Parliament
Holyrood Road
EH99 1SP

0131 348 6547


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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