1. Faculty of Medicine and Health University of Sydney Sydney New South Wales Australia
2. Genetic Metabolic Disorders Service, Sydney Children's Hospitals' Network Sydney New South Wales Australia
3. Rare Voices Australia Melbourne Victoria Australia
4. School of Women's and Children's Health University of NSW Sydney New South Wales Australia
5. Australian Institute of Health Innovation and the NHMRC Partnership Centre for Health System Sustainability Macquarie University Sydney New South Wales Australia