The Rare Care Centre provides globally connected holistic cross-sector care coordination, together with other streams of activities to build capability and capacity to improve the lives of children and families living with rare diseases.
The Centre provides a state-wide service based at Perth Children’s Hospital. For families living remotely, having a child with a rare disease can be even more isolating. The Rare Care Centre is changing this with a hub set to open in the Pilbara in the north-west of Western Australia (WA). The Pilbara is 1,500 km from the capital city, Perth.
Dr Gareth Baynam, IRDiRC Interdisciplinary Scientific Committee (ISC) chair and clinical geneticist and medical director of the Centre, who is also a member of RVA’s Scientific and Medical Advisory Committee, said 63,000 children in WA are living with a rare disease: “For us to be able to deliver this sort of service in remote Australia will be enormous. It will be truly transformative”.