Transitions in care must be supported
Many children with rare disease can ‘fall through the cracks’ of systems as they move from child to adult services. This period is challenging for most children but those with rare diseases have more to contend with. Where possible, children should be encouraged to engage more in their own care, to understand their condition and how to manage it – this may require additional support. The rare disease community has clearly stated that there needs to be better support for the transition from child to adult services. Hospitals across the country are starting to do more to create these services, including the transition clinic for complex and rare disorders at Perth Children’s Hospital that opened in 2019. This clinic provides a path to support the health transition. More is needed in the disability, education, employment and other sectors to support the development of the whole person as they live with rare disease.