The Lupus Association of NSW Inc.

The mission of the Lupus Association is to work towards a world without Lupus and associated connective tissue diseases through support education and research into a cure.

The Lupus Association is a community based counselling and advocacy service with over 1100 members throughout Australia. We are a non-government, not for profit, self-help organisation.

We provide an information and counselling support service for those who have recently been diagnosed as well as those who have been living with lupus for some time.

The Lupus Association provides this website to allow users to gather information. The opinions and statements expressed by the authors or contributors to this website do not necessarily reflect the opinions or positions of the Lupus Association.

History of The Lupus Associtation

Originally known as the “Lupus Club”, a group of people regularly met at the Royal North Shore Hospital to offer each other support and advice on learning to live with lupus. The Club was founded by Colleen Hook in 1979, with the first meeting attracting only a few people. As people living with lupus became aware of the Club, the group grew quickly and it became clear that a larger organisation needed to be developed. In time and with the support of NSW Health the Lupus Association of NSW Inc. was created and was able to employ a part-time administrator. Membership grew well beyond 800 members. Today we have over 4000 registered members.

In recent years, growth has occurred outside of New South Wales and the ACT with membership growing in Queensland and Victoria. The Lupus Association of NSW Inc. is Australia’s most active and longstanding lupus group, offering advice, information, support and networking for patients and those around them. In 2011-12, membership reached current financial members, yet the effects of the Association are more far reaching through the sharing of advice and creation of support networks throughout Australia.

Organisations and small support groups in other states often seek advice from the Lupus Association of NSW Inc. and the Association is happy to help out for the benefit of all those affected by lupus. The relationships between the Lupus Association of NSW Inc. and groups in other states is often bilateral, with information and resources being shared between the groups as much as possible. This is helping to strengthen the lupus community and allow these groups to provide greater support, raise more awareness and increase fundraising to assist research into lupus and other autoimmune illnesses.

Privacy Policy

New amendments to the Commonwealth Privacy Amendment (Private sector) Act 2000 came into effect on 21 December, 2001.

The Lupus Association recognises that your privacy is important and is committed to protecting your personal information. The Association is taking a number of steps to ensure your privacy and personal information is protected in accordance with the Act.

Your personal information is collected to enable us to maintain an up-to-date membership database and target our services in the best interests of our members. It may also be used to gather, aggregate and report statistical information.

You have a right to gain access to your personal information held by the Association and have it corrected if necessary.

Third parties:

All persons handling your personal information in the course of administering the Association and providing services to our members will be bound by confidentiality agreements. Your personal information will not be shared with other third parties, without your consent.