Australia: RArEST Project launches first-ever National Recommendations for Rare Disease Healthcare
To coincide with Rare Disease Day, Australia’s first-ever National Recommendations for Rare Disease Health Care (The Recommendations) are being launched today, 29 February 2024. These Recommendations provide guidance for Australian health professionals on how to provide high-quality care to people living with a rare disease, their families, and other carers.
Eight specific recommendations provide practical steps to be taken by healthcare providers. They cover topics such as person-centred care, timely diagnosis, knowledge sharing, and continuing education. The Recommendations were co-developed by health professionals, academics, and people living with a rare disease as part of the Australian Government-funded Rare Disease Awareness, Education, Support and Training (RArEST) Project.
“From my own lived experience, I believe the Recommendations are a critical step forward. They provide a vision for how the fundamental gaps currently present in rare disease care may be bridged. They empower both health professionals and policy makers to approach rare disease care with a systemic and person-centred focus. Additionally, the Recommendations incorporate the lived experience and expertise of the patient, providing Australians living with a rare disease with a voice in their care.”
– Tim Fulton, individual living with Adult-onset Still’s disease.
To date, the Recommendations have been endorsed by Rare Voices Australia, the country’s national peak body for Australians living with a rare disease, as well as nine national colleges and bodies. They have also been officially recognised as an Accepted Clinical Resource by the Royal Australian College of General Practitioners.
