Project “Seamless Transition: Support Models and Policies for Rare Diseases” is focused on improving the transition process of young people with rare diseases from paediatric to adult healthcare.

The aim of the project is to gain a better understanding of the needs of young people and their families during this sensitive period, and to develop concrete solutions and recommendations for strengthening systemic support. As part of the project, we are conducting comprehensive research into the current situation, including data collection and analysis, as well as consultations with experts.

A particular emphasis is placed on the development and implementation of a mentoring programme that will provide young people and their families with support through counselling, peer support, and access to reliable information.

The project also includes the development of educational and informational materials, the organisation of stakeholder meetings, workshops, and public policy dialogues, with the aim of shaping concrete recommendations for improving the healthcare system.
Through visibility activities, media campaigns, and public events, we seek to ensure that the voices of people living with rare diseases are clearly heard and that their needs are recognised and addressed at a systemic level.

The project is implemented as part of the AstraZeneca Young Health Programme Impact Fellowship.