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RareChat | Transitioning to adult care
21st July at 1:00 pm - 2:30 pm
During our next RareChat on Wednesday 21st July we will explore the rare disease patient experience of transition from childhood to adult care in the health system.
The majority of rare diseases effect children. This means that childhood rare disease care delivered by more generalist paediatricians (doctors who treat infants, children and young people) is often better prepared to manage complex rare cases.
For those patients moving into adult care, the transition can be challenging. Adult care is often less well coordinated. Different body systems are handled by entirely separate specialists, and fewer services are in place specifically for rare diseases.
In this RareChat we are looking to explore the rare disease patient experience of transition from childhood to adult care in the health system. We’d love to hear your personal experience as a patient or carer of transition, the things that worked well, and your recommendations to improve the experience for the next generation.
Join this RareChat ready to discuss:
- Care coordination in childhood and adult services
- The role of parents in the transition process
- How to prepare young patients for the management of their own conditions
- The transition process and its management in hospital
Please note – this RareChat is being run to support a collaborative project on the rare disease transition between Findacure, Cambridge Rare Disease Network, and Costello Medical. We will be using the discussion and ideas generated to inform future work and policy discussions on the topic, but we will not be either directly quoting or naming participants without separately seeking their express permission.