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

Annual Return/Report

Group Officers

Group Members

Organisations

Genetic Alliance UK - secretary and treasurer

Turner Syndrome Support Society

PNH Scotland

Laurence Moon Bardet Beidl Syndrome Society

Brittle Bone Society

Carers Trust

Cystic Fibrosis Trust

TSA Association

Fragile X Society

PID UK

UK PIPS

Haemophilia Scotland

Funny Lumps

Cancer Research UK

Neutropenia UK

Hypopara UK