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: 03 December 2019
This meeting will be held at 1pm in the Sir Alexander Fleming Room (CR3).
Genetic Alliance UK - secretary and treasurer
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)
PCD Support Group for Scotland
Cross Party Groups and GDPR
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