Rare, Genetic and Undiagnosed Conditions
This Cross-party group's purpose:
- 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.
If you want to get in touch, you can contact Natalie Frankish
Involved in the group
MSPs, individuals and organisations who participate in and support this group.
Party: Scottish National Party
MSP for: Glasgow Maryhill and Springburn (Constituency)
Genetic Alliance UK - secretary
Alternating Hemiplegia of Childhood UK (AHC UK)
British Liver Trust
Children's Health Scotland
HSP Support Group
Office for Rare Conditions
Rare Disease Nurse Network
The Aarskog Foundation
The Smith-Magenis Syndrome (SMS) Foundation
Turner Syndrome Support Society