[SZCZECIN CITIZENS' KNOWLEDGE ABOUT RARE DISEASES]

Area of Science:

• Public Health
• Medical Sociology

Background:

• Assessing public knowledge of rare diseases is crucial for targeted health education initiatives.
• Limited awareness can hinder patient support and research efforts.

Purpose of the Study:

• To evaluate the level of knowledge regarding rare diseases among the general population in Szczecin, Poland.
• To compare awareness between a general control group and a group surveyed during Rare Disease Day events.

Main Methods:

• A survey was conducted with 242 adults in Szczecin, Poland.
• Two groups were surveyed: a control group (February 23, 2013) and a research group during Rare Disease Day events (March 2, 2013).
• A questionnaire developed by the authors was used to collect data on rare disease awareness.

Main Results:

• Significantly more participants in the research group (86.02%) knew about Rare Disease Day compared to the control group (57.72%).
• Knowledge about the definition and aim of Rare Disease Day was high in both groups.
• While 74.19% of the research group could provide examples of rare diseases, detailed knowledge did not significantly differ between the groups.

Conclusions:

• Participants aware of Rare Disease Day events demonstrated higher recognition of its existence and purpose.
• No significant differences in detailed knowledge of rare diseases were observed between the groups.
• The findings highlight a need for enhanced public education on rare diseases and support for affected individuals and families.