Established in September 2019, the Rare Disease Social Research Center (RDSRC) at the Institute of Philosophy and Sociology in the Polish Academy of Sciences (IFiS PAN) 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.
A disease is defined as rare in the EU when it affects ≤ 1 : 2 000 citizens. There are more than 6 000 rare diseases and this number is growing. The total number of people affected by rare diseases is estimated at 6%-8% of the population of the EU; this is more than 30 million people (EURORDIS. Rare Diseases Europe). In Poland, the number of people with rare diseases is estimated at between 2.3 and 3 million (The Ministry of Health in Poland 2017).
People with rare diseases and their families face many problems that are also typical for people with disabilities and/or chronic diseases. Therefore, we are open to discussing such issues with academics and representatives from other disciplines.
We look forward to cooperation with social science researchers who are interested in examining rare and chronic diseases in Poland and Europe.
We host a monthly seminar series Society and Technologies on Health and Illness. This seminar focuses on social sciences, humanities, and medical sciences and is suitable for students, academics and professionals who are interested in entanglements of biomedicine and socio-cultural processes and practices. The seminar is conducted in Polish and/or English.