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Cambridge based Costello Medical, Cambridge Rare Disease Network and Beacon launched a new report in March 2022 exploring the transitions process for young people living with rare conditions.  This report is the culmination of a series of focus groups with young people, their parents and carers, patient groups and a round table meeting held in 2021.  These organisations have collaborated on this project in order to shine a light on the challenges of transitions and to share examples of good practice in order to identify workable solutions for the future. A series of recommendations have been made for young people and their families, the patient groups and healthcare professionals who support them. We hope this report will be the beginning of building a better transitions process for all. 

In recent years, advances in the diagnosis and treatment of rare diseases have led to improved life expectancy and quality of life for many patients. Consequently, children with complex and chronic rare diseases, who previously may not have survived past infancy, are now expected to live well into adulthood. The increasing number of patients transitioning from paediatric to adult care has placed growing pressure on healthcare systems to develop age-appropriate services that ensure continuity of quality care.

Transitions in Practice

The report showcases case studies of good transitions in practice at Addenbrookes Hospital, Cambridge and Colchester Hospital.

An extract from the report detailing transition in practice at Addenbrooke’s Hospital. 


Key recommendations

Based on the solutions discussed as part of the focus groups and round table, a set of four key recommendations were compiled and it is hoped that they will help to improve the transition from paediatric to adult care for young people living with rare diseases in the Cambridgeshire region and beyond.

transition to adult care summary of recommendations


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Cambridge Rare Disease Network - Transitions 1
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