Care for Rare Navigator: Digital AI-supported counseling service for families with rare diseases (Care4RareN)

Background 

Families of children, adolescents, and young adults living with rare diseases face complex challenges. Access to understandable, reliable, and comprehensive information is often limited. Existing services are fragmented and require high levels of system navigation and health literacy. At the same time, professionals face high demands, particularly in rural areas, resulting in shortages in care provision. 

Objectives 

The aim of the project is to develop a digital, scalable AI-supported counselling system that provides families with needs-oriented and everyday support. The service complements existing care structures but does not replace professional decision-making.

Method

The project follows a user-centered, participatory mixed-methods design over a period of 24 months. In an initial phase, a literature review and qualitative interviews will be conducted to assess needs. Based on real family counseling sessions, typical counseling scenarios will be identified and translated into a digital counseling logic. Technical implementation will follow an iterative co-design process involving focus groups and the testing of the prototype. The evaluation combines quantitative pre–post assessments, analysis of user data, and qualitative interviews to examine user experience and impact.

Expected Results

The Care for Rare Navigator is expected to strengthen information confidence, self-efficacy, and orientation among affected families while reducing psychosocial burden. Integration into the existing platform of the support association for children with rare diseases (KMSK) ensures practical relevance and sustainability. The project closes an innovation gap between professional support and independent information seeking.