Anna Walat, Michał Marian Skoczylas, Agnieszka Wełnicka, Małgorzata Kulig, Przemysław Rodak, Zuzanna Walczak, Agata Jabłońska


Introduction: The aim of the study was to assess knowledge about rare diseases among citizens of Szczecin (Poland).

Material and methods: The study was performed by questioning 242 adult customers of Turzyn Shopping Centre in Szczecin (149 females and 93 males). The survey was conducted in the shopping mall on 23 February 2013 (control group) and during the celebration of Rare Disease Day and the 12th Polish Nationwide Cystic Fibrosis Week (“Dolina Mukolinków”) on 2 March 2013 (research group). The research tool was a questionnaire devised by the authors and filled out by the writing authors interviewer’s answers.

Results: In the study group more people knew about the existence of Rare Disease Day than in the control group (86.02% vs 57.72%, chi­‍‑square test χ2 > χ2 1; 0.001, p < 0.001), but there was no significant difference between knowledge of when Rare Disease Day is celebrated. The definition of rare diseases compatible with the definition of the European Commission’s Health and Consumer Protection was reported only in the control group by 4 people. Examples of rare diseases were reported by 74.19% of the respondents in the study group and by 65.10% in the control group (more than 130 diseases were mentioned altogether). Usually, respondents mentioned fewer examples than were asked about in the questionnaire. The aim of Rare Disease Day was accurately specified by 86.02% of persons in the study group and 87.92% in the control group. Rare Disease Day personally concerns 30.11% of respondents in the study group and 10.07% of persons in the control group (OR = 3.85, 95% CI 0.9–3.6, χ2 > χ2 1; 0.001, p < 0.001).

Conclusions: The respondents from the research group knew more about Rare Disease Day and defined the idea of it as closed in a significantly higher degree than the control group. There was no significant difference in the detailed knowledge about rare diseases in either group. This might indicate the need to educate society and patients, along with their families.


rare diseases; Rare Disease Day; questionnaire study

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Copyright (c) 2016 Anna Walat, Michał Marian Skoczylas, Agnieszka Wełnicka, Małgorzata Kulig, Przemysław Rodak, Zuzanna Walczak, Agata Jabłońska

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