ESHS/HSS Annual Meeting

Uses and Functions of Rarity in Contemporary UK Biomedicine

• In Event: Rarity in Medicine 2: Geographies and Politics

English Abstract

Over the last 30 years, rare conditions have become highly visible in UK biomedicine. In the late 1990s, the European Organisation for Rare Diseases was founded to promote research on rare diseases and orphan drugs; and in the late 2000s the Genetic Alliance formed Rare Disease UK to develop a national strategy for rare diseases. That same decade saw the inception of international ‘Rare Disease Day’, and in the years since, multiple organisations and campaigns (‘Unique’, Medics4RareDisease), have been initiated to raise awareness of rare conditions, within and outside the medical profession. Meanwhile, the news media publish emotionally charged and complex accounts of the experience of ‘being rare’; and social media parent groups organise around the ‘rare child’ and their emotional and practical support.
How did the concept of the ‘rare’ condition become so useful? How has it become such an effective notion for leveraging funding and visibility? As part of a project that examines the history of how rare diseases have been defined, managed, valued, and experienced, this paper focuses on how, over the last 30 years, UK-based patient and family support organisations for people with genetic conditions have both shaped and leveraged ‘rarity’. It also considers whether some groups do not find it useful to use ‘rare’ as an organising term and concept, and why this might be the case.

Author

• Jenny Bangham, University of Edinburgh