Lobbying for a national rare disease plan in the UK

This chapter examines the background to the campaign for a plan for rare diseases in the UK, and the establishment and role of Rare Disease UK (RDUK) in lobbying for a plan. It discusses how the commitment by the Conservative–Liberal Democrat Government was secured. Genetic Alliance UK aims to improve the lives of people affected by genetic conditions by ensuring that high-quality services and information are available to all who need them. With the increasing interest in rare diseases at a European level, Genetic Alliance UK spotted the window of opportunity to capitalise on this interest and to use it as a lever of change to improve rare disease services and facilitate research in the UK. The organisation was established to campaign for the development of a national plan for rare diseases in the UK, to shape the content of a national plan, and to ensure that a plan is implemented in practice.