New clinics set to benefit rare disease patients

  • Two new clinics for young patients with highly complex health needs, many of whom have a rare disease
  • About 190,000 Western Australians have a rare disease
  • The new transition clinics officially open today on Rare Disease Day 
  • Clinics dedicated to smoothing the path for young patients as they move from paediatric to adult health services have opened at Perth Children’s and Sir Charles Gairdner hospitals.

    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 2,000 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 emergency department presentations and shorter lengths of stay in hospital. 

    The new clinics will begin planning for young patients in advance of their 16th birthday, reducing the likelihood of gaps in care and improving efficiencies for the WA health system.

    Establishment of the clinics responds to a need for improved transition care planning identified in WA’s youth health policy and the Rare Diseases Strategic Framework.

    As noted by Health Minister Roger Cook:

    “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.

    “It is fitting to be announcing the opening of these clinics on Rare Disease Day, a day that seeks to raise awareness for improved care and access to treatment for people with a rare disease.”

    /Public Release. View in full here.