The second Australian Rare Disease Research Network (ARDRN) virtual meeting for 2026 was held in June. The ARDRN has grown to over 120 members, including rare disease researchers from a range of jurisdictions, disciplines and career stages. Importantly, there are members with research policy expertise, including representatives from Genomics Australia and Research Australia.
Rare Voices Australia (RVA) thanks the 35 ARDRN members who joined the June meeting. Additionally, we thank guest speakers Louise Healy, RVA Education and Advocacy Manager; Zurani Ong, Lyfe Languages’ Operations Manager; and Clin/Prof Gareth Baynam, Director of the Centre of Expertise for Rare and Undiagnosed Diseases (Rare Care Centre), for sharing their work. We also thank ARDRN co-chairs, Dr Lisa Ewans and Clin/Prof Gareth Baynam, for co-chairing the meeting.
Brief Meeting Summary
The focus of the meeting was Priority 8 of Australia’s Top 10 Rare Disease Research Priorities, ‘Psychosocial and mental health impacts and support’. This priority directly aligns with several areas in the Australian Government’s National Strategic Action Plan for Rare Diseases, including Priority 2.5, ‘Integrate mental health, and social and emotional wellbeing, into rare disease care and support’.
Dr Ewans set the scene for the meeting highlighting the prevalence of anxiety, stress, isolation and uncertainty for Australians living with a rare disease. She also reinforced the need for research that improves mental health support and embeds strengths-based, trauma-informed care across the healthcare system.
Guest speakers shared their work progressing Priority 8, including the development of tailored mental health resources, case studies, digital tools and courses for Australians living with a rare disease, their families and care teams, including for priority populations. International research progressing Priority 8 was also shared, with a focus on the sobering results from the recent EURORDIS Rare Barometer Survey on Mental Health. Below are links to this existing work:
- Mental Health and Wellbeing Support for Australians Living with a Rare Disease – Rare Awareness Rare Education Portal
- Supporting the Mental Health and Wellbeing of People Living with a Rare Disease – Rare Awareness Rare Education Portal
- Insights for Health Professionals: Supporting the Mental Health and Wellbeing of People Living with a Rare Disease – RVA Education
- Lyfe Languages | Aboriginal Health Language Translation Platform
- EURORDIS Rare Barometer reveals mental health crisis in rare disease community – EURORDIS-Rare Diseases Europe
Dr Ewans then led a guided discussion, giving ARDRN members the opportunity to contribute their experiences, thoughts and insights.
The next ARDRN meeting is scheduled for Tuesday 15 September 2026 between 12pm and 1pm AEST. If you are a rare disease researcher, affiliated with a university or research institution and would like to join the ARDRN, please complete the registration form below.
RVA would also like to acknowledge ARDRN member, Professor Gina Ravenscroft, who has been appointed the inaugural Dr Patricia Kailis Chair in Rare Diseases at The University of Western Australia as part of Western Australia’s Rare Care Comprehensive Centre.
