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.
Next meeting: 05 February 2019
This meeting will be held at 6pm in the David Fleming Room (CR6).
Genetic Alliance UK - secretary
Cystic Fibrosis Trust
Tuberous Sclerosis Association
Turner Syndrome Society
British Liver Trust
Fragile X Society
The Aarskog Foundation
CSF Leak Association
Behcet’s Syndrome Society
Office for Rare Conditions (Glasgow)
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 proved them to the Scottish Parliament are available on our website.