The Rare Care Centre was established in Perth, Western Australia in 2022 to support children and families living with rare and undiagnosed disease on their journeys. We are committed to ensuring that all individuals with rare diseases, regardless of their location, specific diagnosis or lack of, or socioeconomic background, have equitable access to high-quality care and support services. Due to the nature of rare diseases, we have a strong international focus and are actively engaged in numerous global collaborations.
At the heart of the Centre lies a holistic, cross-sector model of care coordination designed to address the unique and multifaceted needs of children and families living with rare and undiagnosed diseases across all aspects of life – physical, mental, emotional, social and financial.
We strive to increase awareness of rare diseases among healthcare professionals, educators, other service providers and the broader community. Through targeted training programs and educational initiatives, we enhance the capacity of the healthcare workforce to recognise, diagnose and manage rare diseases more effectively.
We prioritise research and innovation to advance our understanding of rare diseases, develop new diagnostic tools and therapies and improve patient outcomes for a better quality of life. We actively engage in collaborative research projects and support the translation and implementation of research into clinical practice.
We leverage technology to enhance patient care, improve access to information and facilitate data-driven decision-making. This includes the development and utilisation of digital platforms, artificial intelligence and large language models to support patient care, research and education.
We foster deep and meaningful collaborations with leading researchers, clinicians, patient advocacy organisations and industry worldwide. These partnerships facilitate knowledge exchange and dissemination, promote best practices and advance the global understanding and management of rare diseases.
We actively engage in advocacy efforts to raise awareness of the challenges faced by individuals with rare diseases and campaign for policies and regulatory and legislative change that improves access to diagnosis, treatment and support services.
