Purpose of the group
- To act as a channel of communications between the Scottish Parliament and families affected by rare diseases in Scotland.
- To act as a channel of communications between the Scottish Parliament and people and organisations working in rare disease research, treatment, care and prevention.
- To monitor the development and implementation of a Strategy for Rare Diseases in Scotland.
- To identify areas where inequalities exist in the provision of care and campaign for their improvement.
- To examine areas of policy or service provision relating to rare diseases in Scotland.
Alliance UK - secretary and treasurer
Syndrome Support Society
Moon Bardet Beidl Syndrome Society