Projects funded by the NCN

Information on the principal investigator and host institution

Information of the project and the call

Keywords

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An Anthropology of Rare Diseases: A Study of the Baltic Sea Region

2017/26/E/HS3/00291

Keywords:

medical anthropology cultural anthropology rare diseases biomedical technologies care disability

Descriptors:

  • HS3_11: Ethnography and cultural anthropology (incl. descriptions of traditional cultures, anthropology of magic, worship and religion, cultural change and global processes, anthropology of socio-cultural, ethnic and identity phenomena)
  • HS6_19: Social problems and pragmatics of sociology

Panel:

HS3 - The study of the human past: history, archaeology, ethnology, cultural anthropology

Host institution :

Instytut Filozofii i Socjologii Polskiej Akademii Nauk

woj. mazowieckie

Other projects carried out by the institution 

Principal investigator (from the host institution):

dr hab. Małgorzata Rajtar 

Number of co-investigators in the project: 5

Call: SONATA BIS 7 - announced on 2017-06-14

Amount awarded: 1 682 516 PLN

Project start date (Y-m-d): 2018-05-07

Project end date (Y-m-d): 2023-11-06

Project duration:: 48 months (the same as in the proposal)

Project status: Project completed

Project description

Download the project description in a pdf file

Note - project descriptions were prepared by the authors of the applications themselves and placed in the system in an unchanged form.

Information in the final report

  • Publication in academic press/journals (8)
  • Book publications / chapters in book publications (4)
  1. 'You Become Pretty Much a Healthcare Worker': The Parenting of a Child with Inherited Metabolic Disease and its Metaphors
    Authors:
    Filip Rogalski
    Academic press:
    Medicine Anthropology Theory (rok: 2023, tom: 10 (3), strony: 45681), Wydawca: University of Edinburgh
    Status:
    Published
    DOI:
    10.3.6702 - link to the publication
  2. Antycypując przyszłość – diagnoza a doświadczenie w chorobach rzadkich w Polsce
    Authors:
    Małgorzata Rajtar
    Academic press:
    Lud (rok: 2023, tom: 107, strony: 15250), Wydawca: Polskie Towarzystwo Ludoznawcze
    Status:
    Published
    DOI:
    10.12775/lud107.2023.01 - link to the publication
  3. The Concept of Vulnerability within Research Ethics and Health Policies on Rare Diseases
    Authors:
    Małgorzata Rajtar
    Academic press:
    Przegląd Socjologiczny (rok: 2020, tom: 69(3), strony: 107-127), Wydawca: Łódzkie Towarzystwo Naukowe
    Status:
    Published
    DOI:
    10.26485/PS/2020/69.3/5 - link to the publication
  4. Sensing Rhabdomyolysis: Building Sensorial Knowledge in Inherited Metabolic Disorders in Poland
    Authors:
    Małgorzata Rajtar
    Academic press:
    Medical Anthropology (rok: 2024, ), Wydawca: Taylor & Francis
    Status:
    Submitted
  5. Epistemologies of Living With and Treating Rare Metabolic Disorders
    Authors:
    Filip Rogalski
    Academic press:
    Medical Anthropology (rok: 2022, tom: 41(8), strony: 866-878), Wydawca: Taylor& Francis
    Status:
    Published
    DOI:
    10.1080/01459740.2022.2141630 - link to the publication
  6. Special Issue "Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism"
    Authors:
    Eva-Maria Knoll and Małgorzata Rajtar
    Academic press:
    Social Science & Medicine (tom: Special Issue, strony: 0), Wydawca: Elsevier
    Status:
    Accepted for publication
  7. Special Issue "Living with Rare Diseases in Europe: Uncertainty, negotiations, and temporality"
    Authors:
    Nicoletta Diasio and Małgorzata Rajtar
    Academic press:
    Medical Anthropology (rok: 2026, tom: Special Issue, strony: 0), Wydawca: Taylor & Francis
    Status:
    Accepted for publication
  8. Patient Passports and Vulnerability: Disjunctures in Health Policy Instruments for People with Rare Diseases
    Authors:
    Małgorzata Rajtar
    Academic press:
    Social Science & Medicine (rok: 2024, ), Wydawca: Elsevier
    Status:
    Submitted
  1. Nie dotyczy
    Authors:
    Małgorzata Rajtar i Katarzyna E. Król (red.)
    Book:
    Entanglements of Rare Diseases in the Baltic Sea Region (rok: 2023, tom: Nie dotyczy, strony: 1-224), Wydawca: Lexington Books/Rowaman & Littlefield
    Status:
    Published
  2. Navigating the void: A qualitative study of patients with rare inborn errors of metabolism perception of healthcare regulations
    Authors:
    Katarzyna E. Król
    Book:
    Equal Access to Healthcare in Europe (rok: 2021, tom: Nie dotyczy, strony: 85-110), Wydawca: Scholar Publishing House
    Status:
    Published
  3. Anthropology, Global Health, and Rare Diseases
    Authors:
    Małgorzata Rajtar i Eva-Maria Knoll
    Book:
    The Routledge Handbook of Anthropology and Global Health, edited by T.B. Masvawure & E. Foley (rok: 2024, tom: Nie dotyczy, strony: 353-365), Wydawca: Routledge
    Status:
    Published
  4. Practicing Resilience While Negotiating the Pandemic: The Experiences of People with Rare Diseases in Poland
    Authors:
    Katarzyna E. Król and Małgorzata Rajtar
    Book:
    Negotiating the Pandemic: Cultural, National, and Individual Constructions of COVID-19 (rok: 2022, tom: Nie dotyczy, strony: 125-138), Wydawca: Routledge
    Status:
    Published

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