New transition clinics for rare and complex diseases

Two new transition clinics for children with highly complex medical needs and rare diseases opened on 28 February 2019 at Perth Children’s and Sir Charles Gairdner hospitals - on Rare Diseases Awareness Day.

These transition clinics, which are a first in Western Australia, will provide clearer pathways for patients with highly complex healthcare needs, many of whom have a rare disease and fall under the care of multiple medical specialists.

Rare diseases by definition affect fewer than one in 2000 people, are life-threatening or chronically debilitating and usually genetic in origin. In Western Australia it is estimated that more than 63,000 children have a rare disease.

For patients and their families, the move from paediatric to adult health services can be difficult to navigate and result in a deterioration of the patient’s condition. It is anticipated these clinics will improve patient care and result in fewer ED presentations and shorter lengths of stay in hospital. 

The new clinics will begin planning for young patients in advance of their sixteenth birthdays, reducing the likelihood of gaps in care and improving efficiencies for the WA health system.

The Hon. Roger Cook, Minister for Health attended the launch, saying:

"The young people who will benefit from these new clinics have already had a tough journey in life – usually a childhood spent living with very complex healthcare needs. Helping them to move seamlessly into adult health services will make a significant difference to their health and wellbeing.

“By providing a vital link – and smoothing the pathway – to services that should reduce the need for a hospital stay or emergency department visit, these new clinics build on the great work Western Australia is already doing to improve the lives of people with a rare disease."