Improving Transition Report

From Paediatric to Adult Care for Young People Living with a Rare Disease

The report highlights the experiences of young people transitioning from paediatric to adult care. It was created by Beacon for Rare Disease in collaboration with Costello Medical and Cambridge Rare Disease Network.

The following four recommendations conclude the report:

1) Strengthen the coordination of the transition processes for young adults with rare diseases

2) Ensure that the transition process begins early and allows flexibility for individuals with complex rare diseases

3) Invest in the development of age-appropriate services for teenagers and young adults

4) Hold services accountable for their approach to transition

To read the full report:


Alex - The Leukodystrophy Charity