Abstract

In 2013, the four UK health departments launched a collaborative UK Strategy for Rare Diseases, which included outlining a shared vision ‘to ensure no one gets left behind just because they have a rare disease’ (Department of Health, 2013). At the time, this formal recognition of concerns about equity and social justice in UK healthcare for patients with rare diseases was heralded as a ‘landmark’ by campaigners. Since then, whilst some changes have been welcomed as improvements, the persistence of problems, such as delays in diagnosis, restricted funding of medicines, and patchy local provision, remain on the agenda. This talk will explore the formation and impact of campaigning on rare diseases in contemporary UK healthcare. Questions considered will include: How are ‘rare diseases’ defined and constituted? And what forms of systematic disadvantage are they associated with? Rare diseases, as an emergent site of activism, may illuminate new and pressing factors effecting the distribution of healthcare in the UK today.

Alev Sen is a PhD candidate at the Department of Sociology, University of Cambridge.