The aim of the article was to present the main problems related to the functioning of a child with a rare disease at school and to show the forms of support for the child and his family offered by the school. In the text, I present the results of research carried out using the method of narrative interview among parents of children with a rare genetic disease. Respondents present difficult choices related to the choice of school and frequent changes of educational facilities for their children. They also show positive examples of support provided to the child by the school and educators. Parents appreciate that the teachers establish a subjective relationship with the child and parents, provide the child with proper care during classes, innovate in teaching and the attitude of openness that is passed on to the school community.