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

2017/26/E/HS3/00291

Keywords

Descriptors

  • HS3_11: Etnografia i antropologia kulturowa (w tym: opis kultur tradycyjnych, antropologia magii, kultu i religii, zmiana kulturowa i procesy globalistyczne, antropologia zjawisk społeczno-kulturowych, etnicznych i tożsamościowych)
  • HS6_19: Problemy społeczne i kierunki praktycznych działań socjologów

Panel

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

Host institution

Instytut Filozofii i Socjologii Polskiej Akademii Nauk

Voivodeship: 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
2018-05-07
Project end date
2023-11-06
Project duration
66 months (the same as in the proposal)
Project status
Project settled

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 (6)

  1. The Concept of Vulnerability within Research Ethics and Health Policies on Rare Diseases

    Authors:
    Małgorzata Rajtar
    Academic press:
    Przegląd Socjologiczny (year: 2020, volume: 69(3), pages: 107-127), Publisher: Łódzkie Towarzystwo Naukowe
    Status:
    Published
    DOI:
    10.26485/PS/2020/69.3/5 – link to the publication

  2. Epistemologies of Living With and Treating Rare Metabolic Disorders

    Authors:
    Filip Rogalski
    Academic press:
    Medical Anthropology (year: 2022, volume: 41(8), pages: 866-878), Publisher: Taylor& Francis
    Status:
    Published
    DOI:
    10.1080/01459740.2022.2141630 – link to the publication

  3. '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 (year: 2023, volume: 10 (3), pages: 46046), Publisher: University of Edinburgh
    Status:
    Published
    DOI:
    10.17157/mat.10.3.6702 – link to the publication

  4. Antycypując przyszłość – diagnoza a doświadczenie w chorobach rzadkich w Polsce

    Authors:
    Małgorzata Rajtar
    Academic press:
    Lud (year: 2023, volume: 107, pages: 15250), Publisher: Polskie Towarzystwo Ludoznawcze
    Status:
    Published
    DOI:
    10.12775/lud107.2023.01 – link to the publication

  5. Special Issue Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism

    Authors:
    Eva-Maria Knoll and Małgorzata Rajtar
    Status:
    Accepted for publication

  6. Special Issue Living with Rare Diseases in Europe: Uncertainty, negotiations, and temporality

    Authors:
    Nicoletta Diasio and Małgorzata Rajtar
    Status:
    Accepted for publication

Book publications / chapters in book publications (4)

  1. 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 (year: 2021, volume: Nie dotyczy, pages: 85-110), Publisher: Scholar Publishing House
    Status:
    Published

  2. 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 (year: 2024, volume: Nie dotyczy, pages: 353-365), Publisher: Routledge
    Status:
    Published

  3. Nie dotyczy

    Authors:
    Małgorzata Rajtar i Katarzyna E. Król (red.)
    Book:
    Entanglements of Rare Diseases in the Baltic Sea Region (year: 2023, volume: Nie dotyczy, pages: 1-224), Publisher: Lexington Books/Rowaman & Littlefield
    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 (year: 2022, volume: Nie dotyczy, pages: 125-138), Publisher: Routledge
    Status:
    Published

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