Designing the service of Integrated Transitional Healthcare for Adolescents and young-adults with Rare Diseases [DITHARD]

Young people with rare diseases face enormous challenges when transitioning from pediatric to adult care. Due to inadequate follow-up, their health can deteriorate, they may end up in hospital more often, or even drop out of care entirely. This project develops and tests a new, more tailored and comprehensive care approach to ensure these young people have better access to age-appropriate care that is feasible, effective, and affordable.