History of The Lupus Association


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.