Haemophilia Scotland is a founder member of the Cross Party Group (CPG) on Rare Diseases. All the bleeding disorders we work with are rare enough to be categorised as “Rare Diseases”. In fact many are so rare that they are classified as “Ultra Rare Diseases”. By working with other groups which face similar challenges we can make it easier for MSPs from all parties to understand these conditions and support us.
The CPG has five core purposes.
- 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.
The secretariat for the group is expertly provided by The Genetic Alliance / Rare Diseases UK.
We find it a very useful way of keeping in touch with other similar organisations in Scotland, raising issues, and keeping up to date with the wider policy framework.
We regularly post stories on this site about the work of the CPG so you can keep up to date with the work.
The work of the Cross Party Group on Rare Diseases
CPG discusses the Scottish Medicines Consortium and the New Medicines Fund
CPG plans for the year ahead
CPG discusses National Managed Clinical Networks