The Kids Research Institute Australia is proud to be a part of the Rare Care Comprehensive Centre (RCCC) for children with rare and undiagnosed disease, made possible thanks to one of Western Australis’s biggest philanthropic gifts.
The Stan Perron Charitable Foundation has committed a landmark $221.1 million over the next decade along with Perth Children’s Hospital Foundation ($25 million) and The University of Western Australia ($3 million) to fund the Centre.
The RCCC will bring together clinicians, researchers and cross-sector partners to accelerate diagnosis, improve care and transform outcomes for children and families living with rare and undiagnosed disease.
Rare and undiagnosed diseases are the leading cause of childhood mortality, responsible for six in 10 childhood deaths - more than cancer and trauma combined.
At The Kids our researchers will be contributing to four of the five flagship programs identified by the new Centre – diagnosis, treatment, models of care and artificial intelligence.
Head, Child Disability Professor Jenny Downs will focus on improving clinical trial readiness and health outcomes for children with rare diseases through appropriate measure of care outcomes and health literacy support. Her work aims to improve coordination of care, availability of evidence-based treatment and empower patients and families.
Precision Health Theme Head Associate Professor Timo Lassmann will serve as the Research Lead for the Artificial Intelligence Program, which will harness AI to transform how rare diseases are diagnosed and treated. His team will harness AI to enhance rare disease research through accurate diagnosis, personalised treatment pathways and data insights to reduce diagnostic delays, strengthen patient–provider relationships and enable more equitable, human-centred healthcare delivery.
Head, Translational Genetics Dr Vanessa Fear’s research will address two critical challenges facing rare disease patients – achieving rapid diagnosis and identifying therapeutic approaches that can improve outcomes.
Professor Aleksandra Filipovska, The Kids Louis Landau Chair in Child Health Research, and her team aims to improve diagnosis and treatment access for children with mitochondrial and metabolic diseases through omics technologies and world-first gene therapy approaches.
Rare Care Medical Director Professor Gareth Baynam said the RCCC would be the first of its kind in the world to deliver support across the full journey for families – from diagnosis, through to treatment, care, support and wellbeing.
Associate Professor Lassmann said the centre would transform the lives of WA children and families who’ve been searching for answers, sometimes for years.
What makes this powerful is bringing together leading experts from so many different medical fields, all collaborating to help each child. It’s a true honour to be part of this essential work, Associate Professor Lassmann said.
The Centre’s integrated structure weaves together three core pillars:
- Clinical and Cross-Sector Services, which will deliver coordinated care across health, education, disability and social services;
- Research and Innovation, which will drive world-leading science, clinical trials and new technologies to improve diagnosis, treatment and care outcomes;
- A Rare Care Not-for-Profit, which will accelerate, translate and expand the impact of clinical and research activities and deliver initiatives such as family support programs and the Global Nursing Network for Rare Diseases.
The RCCC brings together multiple government sectors (health, education, disability and community services), including the Child and Adolescent Health Service, UWA, Curtin University, The Kids, Harry Perkins Institute of Medical Research, Murdoch University and the Perron Institute for Neurological and Translational Science, along with community organisations in a unified and integrated approach driven by the voice of the children and families to address their unmet needs. Together, the RCCC will build a future where children and families living with RUD are no longer left behind.