“My full-time unpaid role”: Understanding the (extra)ordinary work of founders of rare disease organisations
Author
Abstract
Suggested Citation
DOI: 10.1016/j.socscimed.2025.117958
Download full text from publisher
As the access to this document is restricted, you may want to
for a different version of it.References listed on IDEAS
- Landzelius, Kyra, 2006. "Introduction: Patient organization movements and new metamorphoses in patienthood," Social Science & Medicine, Elsevier, vol. 62(3), pages 529-537, February.
- David Mosse, 2019. "Can the Experience of Participatory Development Help Think Critically about ‘Patient and Public Involvement’ in UK Healthcare?," Sociological Research Online, , vol. 24(3), pages 444-461, September.
- Endaltseva, Alexandra, 2024. "The work of composition: Situated articulation of visible and invisible work within patient organisations," Social Science & Medicine, Elsevier, vol. 344(C).
- Baggott, Rob & Jones, Kathryn, 2014. "The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK," Social Science & Medicine, Elsevier, vol. 123(C), pages 202-209.
- Nick Pidgeon, 2021. "Engaging publics about environmental and technology risks: frames, values and deliberation," Journal of Risk Research, Taylor & Francis Journals, vol. 24(1), pages 28-46, January.
Most related items
These are the items that most often cite the same works as this one and are cited by the same works as this one.- Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
- repec:bla:glopol:v:8:y:2017:i:s2:p:133-138 is not listed on IDEAS
- Dwivedi, Yogesh K. & Hughes, Laurie & Kar, Arpan Kumar & Baabdullah, Abdullah M. & Grover, Purva & Abbas, Roba & Andreini, Daniela & Abumoghli, Iyad & Barlette, Yves & Bunker, Deborah & Chandra Kruse,, 2022.
"Climate change and COP26: Are digital technologies and information management part of the problem or the solution? An editorial reflection and call to action,"
International Journal of Information Management, Elsevier, vol. 63(C).
- Yogesh K Dwivedi & Laurie Hughes & Arpan Kumar Kar & Abdullah M Baabdullah & Purva Grover & Roba Abbas & Daniela Andreini & Iyad Abumoghli & Yves Barlette & Deborah Bunker & Leona Chandra Kruse & Ioan, 2021. "Climate change and COP26: Are digital technologies and information management part of the problem or the solution? An editorial reflection and call to action," Post-Print hal-04295011, HAL.
- Ormond, Meghann, 2015. "Solidarity by demand? Exit and voice in international medical travel – The case of Indonesia," Social Science & Medicine, Elsevier, vol. 124(C), pages 305-312.
- Panos Kanavos & Olivier Wouters & Jean Mossman & Mary G. Baker & Ingrid Kössler, 2017. "Patient Power as a Driver for Change: Reality or Rhetoric?," Global Policy, London School of Economics and Political Science, vol. 8, pages 133-138, March.
- Hayley Alderson & Eileen Kaner & Amy O’Donnell & Angela Bate, 2022. "A Qualitative Exploration of Stakeholder Involvement in Decision-Making for Alcohol Treatment and Prevention Services," IJERPH, MDPI, vol. 19(4), pages 1-14, February.
- Dimond, Rebecca & Stephens, Neil & Herbrand, Cathy, 2023. "Making patients political: Narrating, curating, enacting, and navigating the ‘idealised policy patient’," Social Science & Medicine, Elsevier, vol. 338(C).
- Hallberg-Sramek, Isabella & Lindgren, Simon & Samuelsson, Jonatan & Sandström, Camilla, 2024. "Applying machine learning to media analysis improves our understanding of forest conflicts," Land Use Policy, Elsevier, vol. 144(C).
- Vololona Rabeharisoa, 2013. "Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society," CSI Working Papers Series 033, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
- Croft, Charlotte & Currie, Graeme, 2020. "Realizing policy aspirations of voluntary sector involvement in integrated care provision: Insights from the English National Health Service," Health Policy, Elsevier, vol. 124(5), pages 549-555.
- Dimond, Rebecca & Bartlett, Andrew & Lewis, Jamie, 2015. "What binds biosociality? The collective effervescence of the parent-led conference," Social Science & Medicine, Elsevier, vol. 126(C), pages 1-8.
- Gareth Hugh Thomas & Jack Flower & Rob Gross & Karen Henwood & Fiona Shirani & Jamie Speirs & Nick Pidgeon, 2024. "A relational approach to characterizing householder perceptions of disruption in heat transitions," Nature Energy, Nature, vol. 9(5), pages 570-579, May.
Corrections
All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:372:y:2025:i:c:s0277953625002886. See general information about how to correct material in RePEc.
If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.
If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .
If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .
Please note that corrections may take a couple of weeks to filter through the various RePEc services.