ABSTRACT
Objective: This research aims to determine the problems faced by individuals living with Cystic Fibrosis (CF) within the scope of their right to access to health.
Materials and Methods: The population of the research is the parents of children living with CF in Turkey. The sample of the study is the parents of children living with CF, who are members of the Cystic Fibrosis Assistance and Solidarity Association. The research data were obtained by conducting in-depth interviews with 10 mothers or fathers between November 2018 and February 2019, using a semi-structured form developed by the researchers. The data were evaluated by thematic analysis method.

Results: 6 out of 10 interviewees are women. With the analysis of the data, five main themes were reached in the titles of access to diagnosis and medicine, being informed about the diagnosis, and access to emergency health and physical therapy services. Parents are concerned about the risk of infection in accessing emergency services and the limited knowledge of physicians about CF. In addition to the procedural difficulties involved in accessing drugs, there are problems with access to new drugs and reliance on generic drugs.
Discussion and Conclusion: It is important to apply some measures in order to strengthen the right of children living with CF to access health services. Although it has become easier for individuals to be diagnosed with screening tests, more effective procedures should be established in directing families to relevant units. Reliable and accessible information should be prepared to inform families about the diagnosis.
Key words: Rare diseases; cystic fibrosis, right to health, access to health