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Emerging Social Science Research Networks on Rare Diseases

On March 10th and 11th of 2022 a group of interdisciplinary social science researchers met face-to-face and on-line to share their research at a workshop entitled “Assemblages of Rare Diseases”. Over the course of two days researchers from 14 countries (mostly Europe, North America, and South America) and over 20 different academic institutions presented research on a wide range of topics relevant to rare diseases which include:

  • the experience of rare disease patients

  • the value of patient narratives in rare diseases diagnostics, research and care

  • emerging forms of research and innovation in the rare disease space

  • prospective future of rare disease treatments

  • and rare disease health policies and public health

While our SPIN team presented work on our project, and the novel heuristic device of “social pharmaceutical innovation” that we are developing, this event points to emerging concentrations and networks of interdisciplinary social science research dedicated to rare diseases. What is more, entire interdisciplinary social science research units are emerging in this area.

This event was organized by the Rare Disease Social Research Center (RDSRC) (http://rdsrc.ifispan.pl/en/ ), which is a newly established research center (from September 2019) that is a part of the Institute of Philosophy and Sociology in the Polish Academy of Sciences (IFiS PAN https://ifispan.pl/en/ ) based in Warsaw, Poland. The RDSRC “aims at conducting interdisciplinary and comparative qualitative research on rare and chronic diseases. Drawing from medical anthropology, medical sociology, bioethics, Science and Technology Studies, and studies on disabilities among others, in our research we address a number of issues, such as:

  • Experiences of people living with rare diseases and their families in the context of biomedicine, social services, and health politics in different countries;

  • Access to and the utilization of biomedical technologies in rare diseases;

  • Production of knowledge on rare diseases;

  • The Role and activities of patient organizations and the emergence of biosocialities;

  • Bioethical issues which arise/emerge with the introduction of innovative therapies and orphan drugs;

  • Ethical issues related to caring out ethnographic research among people with rare diseases.”

These events, these networks, and centres like the RDSRC are key sites for the study and development of social pharmaceutical innovation, and point to the momentum that is building across and between disciplines in the study of rare diseases for rare disease patients.

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