Perth Children’s Hospital Creating New Rare Care Centre
March 3, 2022
Western Australia is establishing a Rare Care Centre at Perth Children’s Hospital that will provide a holistic model of care for children with rare and undiagnosed diseases.
The Center has secured funding from leading philanthropists in Western Australia. Together they have provided a total commitment of $7.3 million (AUS10 million) over five years, starting July 2022.
The Center 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 Center 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 center, global partnerships, research collaborations, support programs, and advocacy for rare and undiagnosed diseases.
The Centre will work with world-leading rare diseases experts, including the World Health Organisation Global Network for Rare Diseases.
Clinical geneticist and Centre Medical Director Gareth Baynam said 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.
“Although they are called ‘rare,’ cumulatively the impact of rare diseases is massive,” said Baynam, who noted there are more than 60,000 children and young people living with a rare disease in Western Australia. “This is an area of such severe and large unmet need; rare and undiagnosed diseases are like a hidden, global endemic.”
Author: Rare Daily Staff
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