The relevance of the topic is due to the fact that the number of diseases, including orphan ones, is not decreasing in the world, i.e. rare and practically incurable, which also include diseases caused by primary immunodeficiency. There are many children among the sick who often become disabled. But if treatment is started in a timely manner, they can lead normal lives and reach their full potential. Children with such diseases face various difficulties: delayed diagnosis of the disease, disability, expensive medications, constant hospitalization. Their life is complicated by the fact that society is often not ready to recognize the peculiarities of their health and create conditions for education, leisure and communication with peers. The authors of the article conducted a study and a sociological survey of sick children with primary immunodeficiency and their parents. The problems faced by such children in the education and upbringing system are identified. Problems are grouped by institutional blocks (preschool, school, family, additional education and leisure). It was found that the group of the subjects was experiencing difficulties in interacting not only with representatives of medical, but also educational institutions. Kindergarten, school and recreational staff do not have the capacity to create the conditions needed for children with primary immunodeficiency, and staff often lack the desire to accommodate the special needs of their clients. This leads to the fact that the quality of services decreases, and children experience problems with socialization. To solve the identified problems, the authors developed some recommendations.