World-first Rare Care Centre will coordinate rare disease care at Perth Children’s Hospital
Western Australia is taking a global leading role in establishing a Rare Care Centre that will provide a holistic model of care for children with rare and undiagnosed diseases.
Based at Perth Children’s Hospital, the Centre has secured funding from leading WA philanthropists – the Angela Wright Bennett Foundation, the McCusker Charitable Foundation via the Channel 7 Telethon Trust, the Stan Perron Charitable Foundation and Perth Children’s Hospital Foundation through a significant contribution from our longstanding partners Mineral Resources Limited.
The Centre will deliver improved awareness and early identification of children with potential rare diseases and enhanced referrals to support earlier and more accurate diagnosis. It will also provide improved support and care coordination; and better access to community resources, clinical trials and research.
The Centre will also focus on Aboriginal health and mental health, connecting the child and their families with a wider range of services, such as education and disability services.
“Although they are called ‘rare’, cumulatively the impact of rare diseases is massive. There are more than 60,000 children and young people living with a rare disease in WA, which is enough to fill Optus Stadium. This is an area of such severe and large unmet need; rare and undiagnosed diseases are like a hidden, global endemic.” – Clinical Geneticist and Centre Medical Director, Dr Gareth Baynam.
Funding from donors will help establish the development of an education centre, global partnerships, research collaborations, support programs and advocacy for rare and undiagnosed diseases.
“Mineral Resources feel really passionate about supporting the children of WA. Most people in WA would be shocked to learn that there’s 63,000 children in this state living with rare illnesses. By Mineral Resources donating a million dollars to support this project, we think there’s a fantastic opportunity for this new centre to deliver something that makes a real difference for these kids.” – Mark Donovan, Mineral Resources Limited General Manager of External Affairs
“Mineral Resources Limited are a major partner of the Perth Children’s Hospital Foundation. They’re a highly successful WA company and their passion for child health care and research in this important area aligns with us so well. We’re delighted to have them as a partner.” – Carrick Robinson, CEO, Perth Children’s Hospital Foundation