Rare Disease, Common Impact: Addressing Rare and Undiagnosed Diseases in Northern Australia to Benefit All
Tracks
Silent Conferencing
| Tuesday, August 27, 2024 |
| 3:50 PM - 4:10 PM |
Overview
Prof Gareth Baynam & Ms Kaila Stevens, Rare Care Centre, Perth Children's Hospital, Child And Adolescent Health Service
Speaker
Prof Gareth Baynam
Medical Director
Rare Care Centre, Perth Children's Hospital, Child And Adolescent Health Service
Rare Disease, Common Impact: Addressing rare and undiagnosed diseases in Northern Australia to benefit all.
Abstract
In Australia 408,000 children have a rare or undiagnosed disease (RUD). These conditions are severe, chronic, often disabling and life-limiting, and affect all aspects of life; care needs are complex, span multiple sectors, and coordinating that care is an overwhelming burden on families. Approximately 20,000 children with a RUD live in Northern Australia where these health complexities are compounded by the challenges of distance; lack of primary and tertiary care; lack of community and disability supports; and limited access to culturally secure care. To meet the needs of these families, transformative approaches require place-based, community co-designed, enduring, and empowering solutions.
The Rare Care Centre at Perth Children’s Hospital has implemented a world-first state-wide clinical service; a holistic and integrated, child and family-centric, cross-sector care coordination service to address the unmet needs of children with RUDs in Western Australia. The next challenge is to equitably adapt this model into Northwestern Australia through the implementation of a Pilbara Hub, creating a blueprint for Northern, and remote Australia, the Pacific and beyond. Through extensive stakeholder engagement and community co-design, tailoring of the model of care is underway to ensure it meets the unique needs of the community. Utilising existing infrastructure, it will provide culturally secure care on Country and closer-to-home, creating equitable and direct access to care. The hub will act as an epicentre for capacity building and opportunities in RUD care, research, education and training for the region and Northern Australia, which will translate into outcomes for common diseases and other sectors. Rare Diseases provide advancements that directly benefit the wider community through new medicines, economic diversification opportunities, regional and global partnerships and insights into issues such as climate change. Prioritising the unmet needs of families with RUD in the Pilbara will have significant impacts across the region, nation, and globe.
The Rare Care Centre at Perth Children’s Hospital has implemented a world-first state-wide clinical service; a holistic and integrated, child and family-centric, cross-sector care coordination service to address the unmet needs of children with RUDs in Western Australia. The next challenge is to equitably adapt this model into Northwestern Australia through the implementation of a Pilbara Hub, creating a blueprint for Northern, and remote Australia, the Pacific and beyond. Through extensive stakeholder engagement and community co-design, tailoring of the model of care is underway to ensure it meets the unique needs of the community. Utilising existing infrastructure, it will provide culturally secure care on Country and closer-to-home, creating equitable and direct access to care. The hub will act as an epicentre for capacity building and opportunities in RUD care, research, education and training for the region and Northern Australia, which will translate into outcomes for common diseases and other sectors. Rare Diseases provide advancements that directly benefit the wider community through new medicines, economic diversification opportunities, regional and global partnerships and insights into issues such as climate change. Prioritising the unmet needs of families with RUD in the Pilbara will have significant impacts across the region, nation, and globe.
Biography
Professor Gareth Baynam is the Medical Director of the Rare Care Centre at Perth Children’s Hospital, a Founding Board Member of the Undiagnosed Diseases Network International, Program Director and Founder of the Undiagnosed Diseases Program WA at GHWA, Head of the WA Register of Developmental Anomalies, Chair of the Diagnostics Scientific Committee of the International Rare Diseases Research Consortium and Founder of Project Y, Lyfe Languages (Universal Indigenous Medical Translator) and Cliniface (3D facial analysis for rare diseases diagnosis).
