“My full-time unpaid role”: Understanding the (extra)ordinary work of founders of rare disease organisations

Abstract

Rare disease organisations can play a crucial role in shaping the medical and scientific landscape. This article draws from interviews with sixteen founders of UK-based, rare disease organisations, all of whom were patients, parents or family members, to understand their experiences and commitment to the organisation and its community. First, we explore the work involved in creating a professional community and addressing the challenge of expert capacity-building for rare diseases. We then utilise the concept of ‘translation’ to emphasise the efforts of founders at an intermediate stage, for example encouraging health professionals to collaborate and realise that a project is achievable. Third, we consider the personal implications for the founders in their efforts to develop and sustain the organisation. Founders' biographies are intimately entwined with the establishment and development of their organisation, and we highlight how they are fundamentally shaped by the necessity of their hard work, skills and passion. Finally, we recognise that although some of the efforts of founders are undervalued both socially and economically, the founders themselves understand their work and role as crucial to the organisation's long-term success.