ArticleIntractable & rare diseases research2019
Medical students' knowledge and opinions about rare diseases: A case study from Poland.
Article in Intractable & rare diseases research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers.
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Who cites it
37 citing papers in PubMed, 100 citations in OpenAlex.
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- "We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.Frontiers in public health · 2026Article
- Enhancing Rare Disease Awareness and Education Among Medical Professionals and Students in Türkiye.Journal of evaluation in clinical practice · 2025Article
- A cross-country analysis of Polish, Serbian, and Czech medical students' competencies in working with individuals with intellectual disabilities.BMC medical education · 2025Article
- Awareness and care practices for rare neurologic diseases among senior neurologists: A global survey.Journal of the neurological sciences · 2025Article
- Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation's global rare pediatric disease network.Orphanet journal of rare diseases · 2024Article
- Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study.Journal of clinical psychology in medical settings · 2024Article
- Rare disease diagnosis using knowledge guided retrieval augmentation for ChatGPT.Journal of biomedical informatics · 2024Article
- Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.Orphanet journal of rare diseases · 2024Article
- Emotional journey of patients with specified intractable diseases in Japan.Intractable & rare diseases research · 2024Article
- Challenges associated with delayed definitive diagnosis among Japanese patients with specific intractable diseases: A cross-sectional study.Intractable & rare diseases research · 2023Article
- Pain Care Management in Rare Diseases.Healthcare (Basel, Switzerland) · 2023Article
- What is the awareness of rare diseases among medical students? A survey in Bulgaria.Orphanet journal of rare diseases · 2023Article
- The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey.Orphanet journal of rare diseases · 2022Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- Knowledge level of medical students and physicians about rare diseases in Lima, Peru.Intractable & rare diseases research · 2022Article
- Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study.Orphanet journal of rare diseases · 2022Article
- Knowledge and perception of inborn errors of metabolism (IEMs) among healthcare students at a selected public university in Klang Valley, Malaysia.Intractable & rare diseases research · 2022Article
- Exploring deep learning methods for recognizing rare diseases and their clinical manifestations from texts.BMC bioinformatics · 2022Article
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Authors and funding
2 authors at 1 institution in 1 country.
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No grant is acknowledged in the PubMed record.
Abstract
While genetics constitutes an important part of medical education, one can observe a lack of knowledge about rare diseases (RD) among medical students and healthcare professionals. Meanwhile, many RD are life threatening and chronically debilitating conditions that significantly reduce patients' quality of life. Most RD patients experience various psychiatric symptoms, behavioral changes and mental retardation. Consequently, physicians should be educated on RD. Thus, the aim of this paper is to assess the knowledge about RD among future physicians. The study was conducted among 346 medical students of Poznan University of Medical Sciences. It showed that while 99.4% of respondents had heard the term 'rare disease' and 90.5% knew its main cause, only 11.5% correctly estimated the prevalence of RD. Moreover, only 35.3% knew what percentage of RD is of genetic character and 24.9% that RD are most common among children. Additionally, very few students knew the number of RD patients in Poland (5.2%). Most respondents believed that it is primarily geneticists (76.6%) and pediatricians (74.3%) who should be uniquely educated and trained in RD. Interestingly, although 95.4% of respondents perceived their knowledge about RD as insufficient or very poor and 92.2% did not feel prepared for caring for RD patients, 45.7% believed that it is not necessary to add an extra course on RD into medical curricula. Thus, as most future physicians do not possess knowledge about RD, there is an urgent need to raise the awareness on RD among medical students and educate them about such diseases.
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