Australia’s lupus community has never lacked passion, expertise or commitment. What it has lacked is a clear national point of connection bringing those strengths together.
On World Lupus Day 2026, Lupus Voice Australia officially launched at the Monash World Lupus Day event, where the organisation was formally introduced by Professor Eric Morand, an internationally recognised lupus researcher and rheumatologist who has devoted his career to improving outcomes for people living with lupus and other autoimmune diseases.
A Dragon Claw Charity Initiative, Lupus Voice Australia is a national patient voice organisation focused on advocacy, awareness, education, collaboration and improving outcomes for people living with lupus across Australia.
A milestone moment
Prof. Morand’s introduction marked an important moment for LVA, presenting the organisation to people living with lupus, families and carers, clinicians, researchers, industry representatives and others working to improve lupus care and outcomes. It marked the point at which years of conversations about national coordination, meaningful patient representation and stronger collaboration became a visible public commitment.
A milestone moment. And just the beginning.
Bringing strengths together
Lupus advocacy in Australia has long been supported by dedicated individuals, community groups and organisations doing important work, often at a state or local level.
That work has made a real difference. However, without a clear national point of connection, it has sometimes been difficult for people living with lupus, clinicians, researchers, policymakers and potential partners to know where to go for a coordinated Australian perspective.
Lupus Voice Australia was established in response to that gap.
It is not intended to replace existing organisations, create unnecessary bureaucracy or take ownership away from work already being done. Its purpose is to strengthen alignment, build connections and make it easier for people and organisations to work together across the lupus community.
Patient-informed from the beginning
People living with lupus bring valuable expertise shaped by diagnosis, treatment, unpredictable symptoms, invisible illness and the experience of navigating complex healthcare systems.
Lupus Voice Australia believes that expertise should be heard, respected and meaningfully included in the conversations and decisions that affect the lupus community. Its work is informed by lived experience alongside clinical insight, research and constructive collaboration.
Patient involvement should not be limited to sharing personal stories. It should help shape priorities, identify unmet needs and contribute to better decisions.
Turning purpose into action
Lupus Voice Australia has been established to support practical, constructive advocacy across areas that directly affect people living with lupus, including:
- Health Technology Assessment reform and equitable access to medicines
- public and patient education
- awareness and earlier diagnosis
- research priorities and patient participation
- healthcare policy and quality of life
- practical, evidence-informed information and resources
- stronger representation of lived experience
LVA will approach this work collaboratively, engaging with people living with lupus, healthcare professionals, researchers, policymakers, community organisations, industry and international patient groups where appropriate.
The goal is not simply to be present in these conversations, but to contribute responsibly and help ensure the experiences and priorities of Australians living with lupus are properly understood.
Follow our advocacy in action
Each quarter, the MyFlareUp newsletter will include a dedicated section titled Lupus Voice Australia: Advocacy in Action.
This regular update will share LVA’s advocacy activities, partnerships, community engagement and involvement in the conversations shaping lupus research, healthcare, policy, education and access to medicines.
Future editions will also introduce the people helping to build Lupus Voice Australia, including committee members and the experience and perspectives they bring to the organisation.
Look for Lupus Voice Australia: Advocacy in Action in each quarterly MyFlareUp newsletter to meet the team and follow the work as it develops.
We would love to hear from people living with lupus, their families and carers, clinicians, researchers, organisations and others who share our commitment to improving outcomes for the Australian lupus community.
World Lupus Day 2026 marked the public launch of Lupus Voice Australia – and a new opportunity to build a more connected, coordinated and patient-informed approach to lupus advocacy in Australia.
Uniting in Strength. Advancing Care.
Prof. Eric Morand, Dean of Sub-Faculty of Clinical and Molecular Medicine at Monash University, and Head of Rheumatology at Monash Health, gives a presentation on ‘Specific Therapy for Systemic Lupus Erythematosus (SLE).’ He talks about new research in an article published in Feb24 from Monash, ‘Smith-specific regulatory T-cells that halt the progression of Lupus Nephritis’.
Prof. Morand explains why people with Lupus have their kidneys ‘attacked’, as opposed to people without Lupus.
The real breakthrough, he explains, is recognising that key factor in why healthy people don’t get get their kidneys ‘attacked’, and that is because they have Regulatory T-cells. Essentially, when you have a healthy immune system, your body switches “on” the cells that kill bacteria, and has the ability to then switch them “off” again with a T-Reg cell (a ‘slowing down’ cell).
In people with Lupus, the germ fighting cells do get activated, but have no “off” function, which results in autoimmune disease. This “off” function is what slows down an immune response in your body.
Watch Prof. Morand’s full presentation to learn more of this exciting research.
