At Rare Diseases NSW, we believe that education and community engagement are essential for improving the lives of those affected by rare diseases. We are committed to providing valuable educational resources and partnering with families, advocates, and support teams.
We offer a range of educational programs designed to build capacity in the rare disease health workforce and equip healthcare professionals with the knowledge and skills they need to provide exceptional care. The three-year RArEST project, funded by the Department of Health in collaboration with Rare Voices Australia, has developed a suite of resources and hosts regular collaborative ProjectECHO sessions.
Community involvement is crucial for the success of our initiatives. We work closely with many patient support organisations, particularly Rare Voices Australia, to advocate and ensure that the voices of those affected by rare diseases are heard. Our community events and workshops provide a platform for patients and families to share experiences and learn from each other.
The Rare Disease Awareness, Education, Support and Training (RArEST) Project is a collaboration between Rare Voices Australia, the University of New South Wales, the University of Western Australia and Macquarie University.
The RArEST Project was awarded $1.9 million in funding from the Australian Government to develop and deliver rare disease awareness resources, education, support and training.
The RArEST Project comprises three streams:
Stream 1: Support for individuals, including mental health and wellbeing resources
Stream 2: Health professional education, support and training
Stream 3: Adopting a co-design approach to awareness and education for systemic improvement in rare disease care and support
This work is being guided by a Stakeholder Reference Group, which was appointed in 2022 and consists of people living with a rare disease representing a breadth of rare diseases and communities.
Intended for healthcare and science professionals, this 40-hour short course is a collaboration between UNSW Medicine and Health, UNSW Science, and Garvan’s Kinghorn Centre for Clinical Genomics.
The 8-week program aims to equip participants with the practical skills and knowledge needed to integrate genomics into clinical practice in Australia. The curriculum aligns with guidelines from relevant medical colleges and professional societies. The course covers core topics such as genomic medicine, pre- and post-test genetic counselling, and precision medicine. By the end of the course, participants will be proficient in identifying when to consider genetic and genomic testing, interpreting test results, and developing patient-centred, evidence-based care plans.
The inclusive GeneEQUAL program is a collaboration between the Disability Innovation Institute, UNSW Medicine and Health and UNSW Art, Design and Architecture. Our aim is the development and delivery of a world-leading inclusive, person-centred and respectful genetic model of care for people with intellectual disability, and to co-produce point-of-care resources and education for healthcare professionals such as the NSW Health Centre for Genetics Education GeneEQUAL Toolkit. We have attracted funding from NSW Health and the National Health and Medical Research Centre.