On February 25th, IRDiRC member Western Australian Department of Health announced the launch of a new Rare Care Centre in Perth, Western Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases.
Based at Perth Children
On February 25th, IRDiRC member Western Australian Department of Health announced the launch of a new Rare Care Centre in Perth, Western Australia, which will provide a holistic model of care for children with rare and undiagnosed diseases.
Based at Perth Children’s Hospital (PCH), the Centre has secured funding from leading Australian philanthropists and foundation, with a total commitment of 10 million Australian dollars over 5 years.
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.
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.
Clinical geneticist and Centre Medical Director, Dr Gareth Baynam, who also serves as the Chair of the Diagnostics Scientific Committee (DSC) of IRDiRC, noted that the aim is to improve the lives of children and young people living with a rare disease and their families by providing a holistic and globally connected model of care.
The Centre will work with world-leading rare diseases experts, including the World Health Organisation Global Network for Rare Diseases.
For more information: https://www.cahs.health.wa.gov.au/News/2022/02/25/Rare-diseases-centre-at-PCH