Zobaczyć zebrę – badania społeczne wobec rzadkich chorób genetycznych

Ośrodek Badań Społecznych nad Chorobami Rzadkimi przy IFIS PAN  oraz Stowarzyszenie Pracownia Etnograficzna zapraszają na: spotkanie wokół książki pt. „Entanglements of Rare Diseases in the Baltic Sea Region” (red. Małgorzata Rajtar i Katarzyna E. Król, 2023, Lexington Books/Rowman & Littlefield)

31.01.2024, godz. 18:00
Pracownia Duży Pokój, Warszawa
ul. Warecka 4/6 (wejście od ul. Kubusia Puchatka)

Czym jest syndrom zebry? Jak wygląda codzienność osób z rzadkimi chorobami genetycznymi w Polsce? Czy warsztaty kulinarne mogą być terapią? W jaki sposób to, jak opiekujemy się chorymi oraz nasz stosunek do technologii medycznych są uzależnione od wzorców kulturowych i społecznych?

Podczas spotkania przyjrzymy się doświadczeniu chorowania na rzadkie choroby. Będziemy dyskutować o tym, kto i dlaczego „zarządza” leczeniem w polskich rodzinach, roli  wiedzy „doświadczeniowej” w opiekowaniu się osobą chorą oraz konsekwencjach indywidualnych i systemowych wymuszonej emigracji pacjentów.

Informacje na stronie www: https://etnograficzna.pl/zobaczyc-zebre/

Wydarzenie na Facebooku: https://www.facebook.com/events/273534412408926/

Nagranie ze spotkania jest dostępne na kanale  Youtube Stowarzyszenia Pracownia Etnograficzna: https://www.youtube.com/live/_uuiUgvISuQ?si=BgiuSWLRg88pJa0b

Moderatorka: Agnieszka Wołowicz (UW)

Uczestniczki i uczestnicy spotkania: Anna Chowaniec, Ewa Ehmke vel Emczyńska-Seliga (CZD), Jan Frydrych (UW), Katarzyna Król (GSSR IFiS PAN), Małgorzata Skweres-Kuchta (US i Fundacja Platynowa Drużyna).

Rajtar, M. & K. E. Król (eds.). 2023. Entanglements of Rare Diseases in the Baltic Sea Region. Lexington Books/ Rowman & Littlefield.


A Flyer is available here: Rajtar & Krol_Flyer

Brocher Foundation Workshop “Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism”

9-11 May, 2023 (in-person), Brocher Foundation, Hermance, Switzerland

Małgorzata Rajtar (RDSRC, Institute of Philosophy and Sociology PAS) & Eva-Maria Knoll (Institute for Social Anthropology, Austrian Academy of Sciences) organized an international workshop entitled Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism” at the Brocher Foundation in Switzerland (May 9-11, 2023). The workshop was supported by a grant from the Brocher Foundation.

The workshop gathered an interdisciplinary group of scholars and experts who are involved in research, publication, and advocacy in Rare Diseases (RDs) and Global Health. The aim of this workshop was to reflect on and critically examine biomedical reductionism in the globalizing field of RDs from a social science perspective. The final program of the workshop is available here: BF_WS_Rare_Diseases_program_final_last minute cancel

Picture: Workshop participants at the premises of the BF in Hermance, Switzerland.

Workshop “Assemblages of Rare Diseases”

RDSRC, IFIS-PAN, March 10-11, 2022 (hybrid mode)

Submission deadline: November 15, 2021.

Situated at the intersection of the social and biological, rare diseases have received increased attention from biomedicine, social sciences, health policy, and patient organizations in the last decades. Rare diseases lack a uniform global definition. Nonetheless, they are characterized by a low prevalence in populations (e.g., 1:2000 in the European Union), an inadequate number of experts and knowledge, scarcity of treatment modalities as well as a high emotional valence.

Recognizing the emergent, heterogenous, and situated nature of rare diseases, in this workshop we propose looking at these conditions as “assemblages” (Collier and Ong 2005) that require interdisciplinary scrutiny. Thus, we encourage ethnographically grounded and/or theoretical papers that examine rare diseases through the following analytical lenses:

  1. Production of knowledge and knowledge practices in rare diseases
  2. Biosocialities, patient organizations, and activism in the area of rare diseases
  3. Care in rare diseases
  4. Bioethics and rare diseases
  5. Rare diseases in health policies and public health
  6. Food and nutrition
  7. Imagined and abandoned futures

We invite scholars in anthropology, sociology, STS, disability studies, medical humanities, and related disciplines to submit paper proposals that critically address rare disease assemblages. Paper proposals should include: (1) name of the author(s), (2) title of the paper, (3) up to 250-word abstract, and (4) a short biographical note. Please submit proposals by November 15, 2021, to rdsrc@ifispan.edu.pl The decisions will be made by December 1, 2021.

There is no workshop fee. This workshop is planned in hybrid mode (in-person and online). We plan to publish a selection of workshop papers as a journal special issue.

Keynote speakers:

For more details visit:  https://rdworkshop.ifispan.pl/

CFP American Anthropological Association 2021 Annual Meeting
Baltimore, November 17-21, 2021

Session title: Anthropology and Knowledge Production in Rare Diseases

Organizers: Malgorzata Rajtar (Institute of Philosophy & Sociology, Polish Academy of Sciences) & Eva-Maria Knoll (Institute for Social Anthropology, Austrian Academy of Sciences)

Session abstract: Diversely defined and individually dispersed, rare diseases affect large numbers of people in total; approx. 25-30 million and 30 million inhabitants in the US and the EU respectively are considered to live with a rare disease. Although a growing number of rare diseases have been detected by newborn screening programs, the path to diagnosis for thousands of others is often long and arduous. In the process of diagnosis, rare diseases are often likened to zebras that are infrequently discovered by physicians expecting more common diseases: horses. Due to the small number of individuals living with a given rare disease, randomized controlled trails and the standard “evidence-based” approach to medicine more generally may not be available and/or fail to provide conclusive evidence on rare disease treatment modalities and orphan drugs. Anthropological critique of evidence-based medicine’s hegemony in “making authoritative knowledge claims in biomedicine” (Colvin 2015; Adams 2013) seems to apply to rare disorders in particular.

Inspired by the 2021 AAA Annual Meeting theme “Truth and Responsibility,” in this session, we seek papers that address the production of knowledge and legitimacy in rare diseases. We are asking what kind of knowledge is being produced? By whom? For what purposes? How? Who is challenging this knowledge, its mode of production, and its claim to relevance? Who is producing alternative truths and how are they doing this? What is the relationship between biomedical, genetic, technological, patient advocacy, and anthropological modes of knowledge production in the case of rare diseases? What is the role of anthropologists and other social scientists in the (co-)production of or in challenging such knowledge and its legitimization? Finally, in what ways has the COVID-19 pandemic influenced knowledge production, dissemination, implementation, and/or power inequalities in the field of rare conditions?

We encourage ethnographically grounded and theoretically inspired papers that examine these issues while acknowledging the heterogenous, constructed, and situated nature of medical knowledge (Burri and Dumit 2008) and daily practices in rare diseases.

Please send a 250-word paper proposal to Eva (Eva-Maria.Knoll@oeaw.ac.at) and Malgorzata (mrajtar@ifispan.edu.pl) by 18 May. Deadline for General Call for Paper submissions in the AAA portal: May 26, 2021.

CFP: VANDA (Vienna Anthropology Days) 2020 (September 28-October 1)

VANDA is an international ONLINE conference. It aims to bring together scholars from various fields of anthropology, social sciences and humanities.

We invite you to submit paper abstracts to our session:

“Smallness” as an analytic category in medical anthropology (Session 3)

Organizers: Eva-Maria Knoll (Austrian Academy of Sciences) & Malgorzata Rajtar (Polish Academy of Sciences)

Abstract: A notion of “smallness” plays a crucial role in life with and policies on many diseases, specifically rare disorders but also epidemics or vaccination coverage. Drawing from conceptualizations of smallness proposed as an anthropological stronghold by Hannerz & Gingrich (eds. 2017), this session invites critical contributions that attend to the issue of smallness, critical numbers, threshold values and the likes in the medical field.

Small populations afflicted or small numbers of cases might require special strategies and programs to be noticed. A ‘too small’ for epidemiologists might still have a large impact on the everyday life of local communities. Stigma might be related to smallness. Following Hannerz & Gingrich (2017:6), we want to ask how smallness in reference to health matters “affect(s) life and thought, sensibilities as well as structures of social relationships, in everyday life as well as in the context of critical events.”

How do people, governmental, non-governmental, and transnational organizations perceive smallness regarding afflicted bodies and diseases in their contexts of time, space, environment, and socio-political constellations? What anthropological, medical, and public health strategies and policies are implemented to address research on and/or treatment of (rare, chronic, communicable) diseases that affect a small number of people? What is the role of biosocialities (Rabinow 1996, Gibbon and Novas 2008) in facilitating intimacies, linkages, and networks within these diseases fields? How is “branding” of small populations and their unique diseases (Tupasela 2017) utilized in the context of genetics and biobanking? What is the role of migration in influencing and destabilizing common ideas about the low prevalence of certain diseases in any given region or country?

Deadline for the Call for Papers is July 1st, 2020. Please submit a descriptive abstract (in English; max. 350 words) at: https://vanda.univie.ac.at/call-for-papers/

The Pre-Existing Vulnerabilities of Patients With Rare Disorders in Poland During a Global Pandemic

Rajtar, M. 2020. The Pre-Existing Vulnerabilities of Patients With Rare Disorders in Poland During a Global Pandemic (#WitnessingCorona). In: Medizinethnologie Körper, Gesundheit und Heilung in einer globalisierten Welt. >>>

Call for papers

We would like to invite you to submit proposals to our panel “Awkward collaborations” in studying people with chronic and rare diseases (P12) to be organized at the Mobilising Methods in Medical Anthropology conference will be held 3 to 4 September 2020 at the London School of Hygiene & Tropical Medicine.


Dr Eva-Maria Knoll, Institute for Social Anthropology, Austrian Academy of Sciences
Dr hab. Małgorzata Rajtar, Institute of Philosophy and Sociology, Polish Academy of Sciences


Among scientists and the general public, research on chronic and/or rare diseases has been regarded a domain of the biological and medical sciences. Genes, tissues, and blood samples seem to belong to laboratories rather than constituting socio-political and economic realities. The bodies of participants in clinical trials, babies undergoing newborn screening or blood donors among others, are foregrounded and scrutinized in order to obtain measurable, comparable, and quantifiable data. Subjected to medicalizing concepts and practices, patients and their families, members of patient advocacy groups, and policy makers often appropriate the language rooted in biological and medical sciences.

In this panel, we want to ask what happens when medical anthropologists and other social scientists enter this picture of concept and data creation and perpetuation as collaborators and researchers. Drawing on the idea of “awkward collaboration” (Yates-Doerr 2019), this panel invites papers that address ethical, conceptual, and methodological efforts to work with and/or around differences arising in collaborative research on chronic and rare diseases.

The Call for Papers closes on 12 May 2020.

Proposals should consist of a paper title, a (very) short abstract of <300 characters and an abstract of 250 words. All proposals must be made via the online form that can be found on each panel page: https://nomadit.co.uk/conference/med2020/p/9284