Transition in Rare Diseases

Duration: 01.09.2024-30.08.2026

Funding: Agreement on scientific cooperation between the Polish Academy of Sciences and the Austrian Academy of Sciences

Principal Investigator: Małgorzata Rajtar (RDSRC/Institute of Philosophy and Sociology, Polish Academy of Sciences) & Eva-Maria Knoll (Institute for Social Anthropology, Austrian Academy of Sciences)

This preliminary project will use qualitative research methods to address transition from pediatric care to adult care in selected rare diseases in Poland and Austria. Rare diseases (>8000) are primarily genetic conditions of low prevalence (1:2000) that affect 6-8% of population in Europe. While about 70% of rare diseases affect children, the progress in disease management over the last two decades has improved life expectancy of patients. Yet, health policies and medical curriculums still tend to focus on children with rare diseases. Transitioning from pediatric to adult care has been identified as a “growing public health need” (Inusa et al. 2020). This project aims to identify and examine the specific challenges associated with transition to adulthood and different social, psychological, and medical needs of adults with rare diseases in Poland and Austria.