Rare Diseases

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.

Minutes

• Minutes of Meeting 1 October 2013 (164KB pdf)
• Minutes of Meeting 1 December 2013 (119KB pdf)
• Minutes of Meeting 29 April 2014 (152KB pdf)
• Minutes of Meeting 17 June 2014 (75KB pdf)
• Minutes of Meeting 18 November 2014 (71KB pdf)
• Minutes of Meeting 27 October 2015 (66 KB pdf)
• Minutes of Meeting 8 March 2016 (70KB pdf)

Annual Return/Report

• Registration Form (100KB pdf)
• Annual Return 17 July 2014 (197KB pdf)
• Annual Return 7 July 2015 (197KB pdf)

Group Officers

• Co-Convener: Bob Doris
• Co-Convener: Malcolm Chisholm

Group Members

• Jackie Baillie
• Ken Macintosh
• Nanette Milne
• Richard Lyle

Organisations