IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v366y2025ics0277953624010967.html
   My bibliography  Save this article

Patient passports and vulnerability: Disjunctures in health policy instruments for people with rare diseases

Author

Listed:
  • Rajtar, Małgorzata

Abstract

Rare diseases have had a special status within European Union (EU) health policy since the late 1990s. According to key EU legal documents, rare disease patients are entitled to the same good quality care as others. These individuals are particularly vulnerable due to the “low prevalence” and “uniqueness” of their disease. To ensure that patients with rare disorders in Europe can access high-quality care in their respective countries, the Council of the European Union (2009) recommended that member states adopt plans or strategies for rare diseases. Poland adopted its first Plan for Rare Diseases in 2021.

Suggested Citation

  • Rajtar, Małgorzata, 2025. "Patient passports and vulnerability: Disjunctures in health policy instruments for people with rare diseases," Social Science & Medicine, Elsevier, vol. 366(C).
    • Handle: RePEc:eee:socmed:v:366:y:2025:i:c:s0277953624010967
    DOI: 10.1016/j.socscimed.2024.117642
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953624010967
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2024.117642?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Panter-Brick, Catherine & Eggerman, Mark, 2018. "The field of medical anthropology in Social Science & Medicine," Social Science & Medicine, Elsevier, vol. 196(C), pages 233-239.
    2. Budych, Karolina & Helms, Thomas M. & Schultz, Carsten, 2012. "How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction," Health Policy, Elsevier, vol. 105(2), pages 154-164.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Haynes, Emma & Walker, Roz & Mitchell, Alice G. & Katzenellenbogen, Judy & D'Antoine, Heather & Bessarab, Dawn, 2021. "Decolonizing Indigenous health: Generating a productive dialogue to eliminate Rheumatic Heart Disease in Australia," Social Science & Medicine, Elsevier, vol. 277(C).
    2. Davide Costa & Raffaele Serra, 2025. "The Cultural “Blood Ties” Between Medical Anthropology and Cardiovascular Disease: A Narrative Review," Societies, MDPI, vol. 15(4), pages 1-15, April.
    3. Goeldner, Moritz & Herstatt, Cornelius, 2016. "Are patients and relatives the better innovators? The case of medical smartphone applications," Working Papers 91, Hamburg University of Technology (TUHH), Institute for Technology and Innovation Management.
    4. Nicole Boffin & Elfriede Swinnen & Johan Wens & Montse Urbina & Johan Van der Heyden & Viviane Van Casteren, 2018. "General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey," IJERPH, MDPI, vol. 15(6), pages 1-9, June.
    5. Boeger, Zakea, 2020. "Incorporating mammography into an overseas referral metric: Tongan doctors’ assessments of patient eligibility for medical travel," Social Science & Medicine, Elsevier, vol. 254(C).
    6. Smith, Robert Courtney, 2021. "Analytic autoethnography of familial and institutional social identity construction of My Dad with Alzheimer's: In the emergency room with Erving Goffman and Oliver Sacks," Social Science & Medicine, Elsevier, vol. 277(C).
    7. Haghighat, Darius & Berro, Tala & Torrey Sosa, Lillian & Horowitz, Kayla & Brown-King, Bria & Zayhowski, Kimberly, 2023. "Intersex people's perspectives on affirming healthcare practices: A qualitative study," Social Science & Medicine, Elsevier, vol. 329(C).
    8. Arnold, Rachel & van Teijlingen, Edwin & Ryan, Kath & Holloway, Immy, 2018. "Parallel worlds: An ethnography of care in an Afghan maternity hospital," Social Science & Medicine, Elsevier, vol. 216(C), pages 33-40.
    9. Javier Güeita-Rodriguez & Pilar Famoso-Pérez & Jaime Salom-Moreno & Pilar Carrasco-Garrido & Jorge Pérez-Corrales & Domingo Palacios-Ceña, 2020. "Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study," IJERPH, MDPI, vol. 17(12), pages 1-16, June.
    10. Eva Kesternich & Olaf Rank, 2022. "Beyond patient-sharing: Comparing physician- and patient-induced networks," Health Care Management Science, Springer, vol. 25(3), pages 498-514, September.
    11. Thirlway, Frances & Nyamurungi, Kellen Namusisi & Matovu, Joseph K.B. & Miti, Andrew Kibuuka & Mdege, Noreen Dadirai, 2021. "Tobacco use and cessation in the context of ART adherence: Insights from a qualitative study in HIV clinics in Uganda," Social Science & Medicine, Elsevier, vol. 273(C).
    12. Kasstan, Ben & Mounier-Jack, Sandra & Gaskell, Katherine M. & Eggo, Rosalind M. & Marks, Michael & Chantler, Tracey, 2022. "“We've all got the virus inside us now”: Disaggregating public health relations and responsibilities for health protection in pandemic London," Social Science & Medicine, Elsevier, vol. 309(C).
    13. Thirlway, Frances, 2019. "Nicotine addiction as a moral problem: Barriers to e-cigarette use for smoking cessation in two working-class areas in Northern England," Social Science & Medicine, Elsevier, vol. 238(C), pages 1-1.
    14. Wild, Kayli & Gomes, Lidia & Fernandes, Angelina & de Araujo, Guilhermina & McDonald, Susan & Taft, Angela, 2020. "Security from above and below: A critical ethnography of the health response to violence against women in Timor-Leste," Social Science & Medicine, Elsevier, vol. 260(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:366:y:2025:i:c:s0277953624010967. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.