Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study
A consensus meeting was organised that primarily addressed the psychosocial vulnerability in rare diseases. With the outcomes of this study, we aim for better representation of psychosocial vulnerability within health care and to create future research directions to reduce psychosocial vulnerability in rare diseases.
Authors
- Loes Oomen (ORCID: https://orcid.org/0000-0003-0555-104X)
- Holly Walton (ORCID: https://orcid.org/0000-0002-8746-059X)
- Michaela Dellenmark‐Blom (ORCID: https://orcid.org/0000-0002-1467-9427)
- Monica Franscini
- Charlotte von der Lippe (ORCID: https://orcid.org/0000-0003-3176-0160)
- Iris A.L.M. van Rooij (ORCID: https://orcid.org/0000-0002-9519-966X)
- C.M. Verhaak (ORCID: https://orcid.org/0000-0003-3269-3043)
- Krister W. Fjermestad (ORCID: https://orcid.org/0000-0001-7501-0033)
- André B. Rietman (ORCID: https://orcid.org/0000-0002-9004-0836)
- Rosanne M. Smits (ORCID: https://orcid.org/0000-0003-2682-2654)
- Thomas Kenny (ORCID: https://orcid.org/0000-0002-7666-1775)
- Saskia F. A. Duijts (ORCID: https://orcid.org/0000-0001-6025-5361)
- Linda Kwakkenbos (ORCID: https://orcid.org/0000-0002-1573-4504)
- Michael Bentele
- Laura Inhestern (ORCID: https://orcid.org/0000-0003-2513-7954)
- Caterina Grano (ORCID: https://orcid.org/0000-0002-1899-0773)
- Nicoline Voet (ORCID: https://orcid.org/0000-0001-7381-2817)
- Ivo de Blaauw (ORCID: https://orcid.org/0000-0002-3995-7286)
- Annelies Aerts (ORCID: https://orcid.org/0000-0002-5118-2970)
- Saskia Hendriks (ORCID: https://orcid.org/0000-0003-3574-2306)
- Jan Peter Rake
- Wendy van Zelst-Stams
- Teodor Angelov
Institutions
- Radboud University Nijmegen (NL)
- Universität Hamburg (DE)
- University of Oslo (NO)
- Alexandrovska Hospital (BG)
- German Climate Computing Centre (DE)
- Sahlgrenska University Hospital (SE)
- Radboud University Medical Center (NL)
- Karolinska Institutet (SE)
- Medical University of Sofia (BG)
- International Union of Railways (FR)
- University Medical Center Hamburg-Eppendorf (DE)
- Radboud Institute for Molecular Life Sciences (NL)
- Amalia Kinderziekenhuis (NL)
- Telemark Hospital (NO)
- German Centre for Cardiovascular Research (DE)
- Netherlands Comprehensive Cancer Organisation (NL)
- Erasmus MC - Sophia Children’s Hospital (NL)
- Radiotherapiegroep (NL)
- Azienda Ospedaliera Nazionale SS. Antonio e Biagio e Cesare Arrigo (IT)
- The FRAM Centre (NO)
- Stichting tot Steun VCVGZ (NL)
- University College London (GB)
- Sapienza University of Rome (IT)
- University of Gothenburg (SE)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-10-27
- DOI
- https://doi.org/10.1186/s13023-025-04017-3
- Primary Topic
- BRCA gene mutations in cancer
- Type
- article
- Field-Weighted Citation Impact
- 0.00