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.
Next meeting
Get in touch
If you want to get in touch, you can contact Natalie Frankish
Address:
Email: [email protected]
Involved in the group
MSPs, individuals and organisations who participate in and support this group.
Current Members
Bob Doris
Convener
Party: Scottish National Party
MSP for: Glasgow Maryhill and Springburn (Constituency)
Miles Briggs
Member
Party: Scottish Conservative and Unionist Party
MSP for: Lothian (Region)
Carol Mochan
Member
Party: Scottish Labour
MSP for: South Scotland (Region)
Organisations
Genetic Alliance UK - secretary
Alternating Hemiplegia of Childhood UK (AHC UK)
Autoimflammatory UK
Behcet's UK
British Liver Trust
CHAMP 1
Children's Health Scotland
EDS UK
Haemophillia Scotland
HSP Support Group
MyAware
NLRP12
Office for Rare Conditions
PNH Scotland
PSP Association
Rare Disease Nurse Network
The Aarskog Foundation
The Smith-Magenis Syndrome (SMS) Foundation
Turner Syndrome Support Society