Welcome
Since 1979 Lupus Association of NSW has been the leading peak body which offers advice, information, support and networking for patients across NSW and now also parts of Australia.
Our priorities
1. To facilitate support and provide counselling and factual up to date information for our members.
2. To promote understanding of Systemic Lupus Erythematosus (SLE) and related Connective Tissue Diseases (CTD) amongst ourselves, our families, medical and allied health professionals and the community.
3. To operate as a resource base for information and literature regarding Systemic Lupus Erythematosus and related Connective Tissue Diseases.
4. To liaise with similar organisations both interstate and overseas.
5. To promote financial support for research, training and health care services for Systemic Lupus Erythematosus and related Connective Tissue Diseases.
6. To consult with Government bodies for appropriate funding for Systemic Lupus Erythematosus and related Connective Tissue Diseases.
October is National Lupus Awareness Month
Lupus Awareness Month takes place during October in Australia every year. It is an important opportunity to raise awareness of the disease.
Building awareness of lupus is essential to improve early diagnosis and treatment of this unpredictable and misunderstood disease, and ensure that people with lupus are aware of the support and resources available to help them manage the disease.
Lupus Awareness Morning Tea
Ms Liza Butler, State Member for South Coast, is hosting a morning tea in Sanctuary Point on Tuesday, 7 October in recognition of Lupus Awareness Month.
Guest speaker is Barbara Ward, President/CEO Lupus Association NSW.
Latest News and Research
National Nutrition Week 2025.
This week marks the launch of National Nutrition Week, 13-19 October.
“I am proud to celebrate over 40 years of Nutrition Australia’s commitment to nourishing our nation. This year’s theme, ‘Inspiring a Connected and Nourished Australia,’ highlights the power of food to bring us together— at home, at school, at work, and in our communities. Let’s use this week to embrace healthy choices, create positive mealtime habits, and foster connections that support our wellbeing.’ Cr Barbara Ward, Nutrition Australia (NSW) President.
Join us as we celebrate our 41st National Nutrition Week! Click here to find out more about our mission and how you can get involved.
Nutrition Australia (NSW) works closely with Lupus in complementing a healthy lifestyle so if you need inspiration, check out our nutritious and delicious recipes that are perfect for connecting with food and the right exercise regime.
For more information visit our website, and remember to follow us and Nutrition Australia via our social media channels to keep up to date with us during National Nutrition Week.
Warmest,
Barbara
Global Survey from World Lupus Federation Finds Nearly Half of People with Lupus Report Kidney Involvement
New data highlights urgent need for improved education and diagnosis of lupus nephritis (lupus-related kidney disease), a serious complication of lupus
The Lupus Association of NSW, through the World Lupus Federation, is sharing new findings from its 2025 global survey focused on lupus nephritis (lupus-related kidney disease).
More than 3,200 people with lupus from 84 countries participated in the survey, with more than 85% of respondents reporting that they had experienced common lupus nephritis symptoms, yet only 47% of respondents reporting their kidneys were affected because of lupus. The survey findings point to a clear and urgent need for greater education, awareness, and proactive care.
Here are just a few key takeaways:
- More than 43% of respondents reported having little or no knowledge about lupus nephritis.
- More than 1 in 3 with lupus nephritis have not had a kidney biopsy, the gold standard for diagnosing lupus nephritis.
- Nearly 3 in 4 who did not report kidney involvement still said they've experienced at least one common symptom, like protein in the urine (proteinuria).
We invite you to take a closer look at the survey results in our press release and view the topline summary and detailed survey results.
As we approach World Lupus Day on May 10, this data reinforces the importance of raising our collective voice, improving education, and ensuring that every person living with lupus has the information and tools they need to protect their health.
Thank you for your continued support as we work together to advance lupus research, awareness, education, and advocacy.
Paracetamol & Autism?
Donald Trump has warned pregnant women not to use paracetamol (or Tylenol as it’s known in the US), saying — without any evidence — it can be associated with an increased risk of autism in their babies. It prompted health organisations to quickly reassure pregnant women about the lack of evidence to support the claim. President of the Australian Medical Association Danielle McMullen has also corrected Trump’s claim today and said the last thing she wants is for pregnant women to feel scared, guilty or nervous.
Extracted from Women’s Agenda Daily – 23rd September 2025
Cutaneous Lupus Erythematosus Clinical Trial (Lavender, Astrazeneca)
You are invited to take part in a research study if you have chronic and/or subacute cutaneous lupus erythematosus (CLE) (a medical condition similar to lupus which impacts your skin, hair, and other body surfaces).
The research study is testing a new treatment for chronic and/or subacute cutaneous lupus erythematosus. The new treatment is called AnifrolumabWestmead Hospital is undertaking a lupus clinical trial with people that having the following that we are recruiting for here at Westmead Hospital.
Cutaneous Lupus Erythematosus Clinical Trial (Lavender, Astrazeneca)
- Multicenter, Randomized, Double-blind, Placebo-controlled, Phase III Study to Evaluate the Efficacy and Safety of Anifrolumab in Adults with Chronic and/or Subacute Cutaneous Lupus Erythematosus who are Refractory and/or Intolerant to Antimalarial Therapy
- Can have systemic involvement
- 120mg anifrolumab subcutaneously once weekly
- 24 weeks of blinded placebo vs active drug period followed by 28 weeks of open-label treatment with anifrolumab
If you are interested, please reach out to the following via these emails:
1. William.Luu@health.nsw.gov.au
2. WSLHD-Dermatology-ClinicalTrials@health.nsw.gov.au
Attached is the Participant Information document that is more detailed for anyone who is particularly interested.
Thank you again for your time and support!
What is lupus?
Also known as systemic lupus erythematosus (SLE), lupus reprograms immune cells so they attack the body itself, resulting in chronic inflammation. It can affect the kidneys, joints, skin, brain, and the lining of the heart and lungs. Lupus can be mild or life-threatening.
Risk factors for developing lupus
The triggers for lupus are poorly understood. Some factors that are associated with developing lupus are:
- Being female: 90 per cent of Australians with lupus are women.
- Early adulthood: most cases of lupus are detected in people aged between 15 and 40.
- Genetic susceptibility: lupus is more prevalent in some families and some racial groups. Lupus is more prevalent and more severe in Aboriginal Australians than in the wider Australian population.
- Sunlight exposure can be a trigger in susceptible people.
Key Statistics
1 in 1,000
Lupus is estimated to affect more than 25,000 (1 in 1,000) people in Australia
15-45
Onset usually occurs between 15 and 45 years
90%
90% of those affected are women
Signs & Symptoms
How Does Lupus Affect the Body
Tips for Living with Lupus
Raise a hand to help us
Help research to find a cure!
Join us as we work to find a cure for this hidden monster
The Lupus Association of NSW site is for informational purposes only and should not be a substitute for professional medical advice, examination, diagnosis or treatment. However, do not delay seeking or disregard medical advice based on information on this site. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. Medical information changes rapidly and while the Lupus Association of NSW make efforts to continually update the content on the site, some information may be out of date.