Epidermolysis bullosa is a rare disease characterized by blistering and skin vulnerability. Blisters are formed due to skin trauma or spontaneously, and the disease is also characterized by changes in the hands and feet, mucous membranes of the eye, mouth or genitals, involvement of the larynx and esophagus. EB, like most other rare diseases, in addition to the medical aspect has a social and psychological impact on the person with the rare disease as well as on their family members. The aim of the study was to gain insight into some aspects of the quality of life of children with epidermolysis bullosa and their parents from the perspective of parents. The study involved 6 participants who presented their own experiences using the method of semi-structured interview. The results show participants' satisfaction with physical and mental health, coping with EB, support from formal and informal sources, positive reaction from the environment, broad social network of the child, employment status, satisfaction with DEBRA, health services, satisfaction with financial situation and positive influence of religion in life. Dissatisfaction of the participants was noticed in the first contact with the Center for Social Welfare, the existence of a lot of daily obligations without free time and the existing offer of entertainment in the place of residence. Also, since participants with all three types of EB participated in the study, similarities and differences between types of EB were observed. Based on the results, suggestions were offered that could increase the quality of life of families with EB in aspects in which they verbalize reduced satisfaction.