Lupus Information and Support
The Lupus Group of WA
The Lupus Group of WA was formed in 1979 as a voluntary non-profit organisation, and became incorporated in 1986. The Group is self-funded (receiving no state or federal funding) and thus relies heavily on memberships, donations and fundraising.
The Group was formed largely out of a desperate need for education and knowledge of lupus, as at that time very little information was readily available. Also, there was a need to develop a forum whereby problems and common issues could be readily discussed.
Formation of the Group has allowed services to be developed over the years to provide support and information to people with lupus, their families, carers and doctors, in the way of self-help support groups, educational material through newsletters, library resources, fact sheets, booklets, and the provision of seminars by medical and health professionals.
The Group continues to provide support and education to people with lupus, their carers and the medical profession, while promoting in the broader community an understanding of lupus and its impact on those directly and indirectly involved.
If you require any information please contact us at firstname.lastname@example.org or phone 08 92243144 and leave a message.
Lupus WA Members
If you have a current membership you can access a comprehensive range of information on this website.
Q&A AFTERNOON 2:00PM 12TH MARCH 2016
BRUCE HUNT LECTURE THEATRE
WELLINGTON ST ENTRANCE RPH
All Lupus patients, family, friends and supporters are invited to the March Q&A afternoon on Saturday 12th March 2016.
This afternoon, which is free for members and a gold coin donation for non-members, will provide opportunity for those who attend to listen to our medical
team and later for you to ask your own questions. Dr Michaela Lucas will provide information about the blood and urine tests we all have, their purpose and interpretation.
After the formal discussion there will be a time of chatting over afternoon tea, so put this date in your diary and plan to join us.
We look forward to seeing you there!
Thanks to Uniting Way
This new website has been made possible thanks to the generous financial support of Uniting Way
Perth Lupus Registry
The Perth Systemic Lupus Erythematosus Registry (Perth Lupus Registry-PLR) is a collaboration between the WA Health and the University of Western Australia’s – School of Medicine & Pharmacology. The PLR will be a disease-specific database for SLE patients and record disease parameters in people with Systemic Lupus Erythematosus (SLE) among the West Australian population in order to allow for the following SLE research in Western Australia:
1) Epidemiological characteristics (incidence/prevalence/genetic and environmental risk factors)
2) Cross-sectional biomedical studies (biomarkers)
3) Longitudinal studies (outcomes, predictors, biomarkers)
4) Interventional studies (participation in clinical trials)
How can you participate?
For more information about the Perth Lupus Registry, please call or email the team on either (08) 6151 1041 (UWA), (08) 9346 4072 (SCGH) or email@example.com to ask for a Patient Information and Consent Form to be sent to you. Participation is completely voluntary and can be ended at any given time.
How will your information be collected and stored?
Information will be collected during your routine visit with your doctor. If information is not available during this consultation (e.g. results of blood samples) then your information will be collected from medical records at the hospital or your health care providers. The PLR takes your privacy very seriously and closely protects patient confidentiality. All information will be de-identified and stored on a dedicated secure server at UWA. The PLR has been approved by the Human Research Ethics Committee at QE II campus.
When will we see results from Perth Lupus Registry?
After every 12-24 months of data collection, the Perth Lupus Registry will analyse the data and publish the results at local scientific meetings, using only aggregated, de-identified data.
The first findings are expected to be released in 2017.