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

Dimond, Rebecca ORCID: https://orcid.org/0000-0003-1974-7289 and Lewis, Jamie ORCID: https://orcid.org/0000-0002-1065-6017 2025. “My full-time unpaid role”: Understanding the (extra)ordinary work of founders of rare disease organisations. Social Science and Medicine 372 , 117958. 10.1016/j.socscimed.2025.117958

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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 it is fundamentally shaped by the necessity of their hard work, skills and passion. Finally, we recognise that although some of the efforts of founders undervalued both socially and economically, the founders themselves understand their work and role as crucial to the organisation’s long-term success.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Schools > Social Sciences (Includes Criminology and Education) Schools > Medicine
Subjects:	H Social Sciences > H Social Sciences (General)
Publisher:	Elsevier
ISSN:	0037-7856
Date of First Compliant Deposit:	21 March 2025
Date of Acceptance:	12 March 2025
Last Modified:	26 Mar 2025 09:36
URI:	https://orca.cardiff.ac.uk/id/eprint/176941

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