Sarcoidosis is a little-known condition that may attack virtually every organ in the body, is very difficult to diagnose and for which there are very few treatments, and certainly no cure. The incidence and prevalence in Australia is unknown, but is probably 20-30/100,000 representing between 5-8,000 patients nationally.
Sarcoidosis may present acutely, with a sudden and severe onset, or may have a slow, insidious presentation. Disease duration and severity vary. Some patients may have a relatively short disease duration of several months to a year or two, with the disease then going into remission, either spontaneously or with the help of medication. Other patients may develop a chronic form of sarcoidosis in which the disease remains active for many years. Progression of the disease over time may lead to increasing morbidity, often lung and heart transplants or death.
Yet we know very little about this disease, diagnosis is difficult, management is haphazard and there is no cure. The National Health and Medical Research Council (NHMRC) has never funded a research project on sarcoidosis and since 2007, when sarcoidosis was the focus of an editorial in the Australian Medical Journal, virtually no research has been undertaken in Australia. There is no registry of sarcoidosis patients in Australia, but in NSW alone over 1100 cases patients with a primary diagnosis of sarcoidosis presented to the Emergency Department (ED) over a five year period.
SARI is a new multi-disciplinary initiative at UNSW to advocate on behalf of all Australian sarcoidosis patients for greater recognition of this condition and greater support for research on improved methods of diagnosis, management and cure. This is important not only for those suffering from sarcoidosis but also for a better understanding of a range of related auto-immune conditions which appear to be on the increase.
SARI is seeking funds from the public and Government to begin research on new novel diagnostic methods and better treatment regimes, as well as a better understanding of immune system responses and genetic predisposition to suffering from sarcoidosis.
SARI will be launched by the Deputy Vice Chancellor, Research and Enterprise, Prof. Nicholas Fisk, at 1:00pm on Thursday 26th October in the Peter Farrell room in the Scientia Building at the UNSW Kensington Campus (Entrance via Botany St).
For further information contact SARI Secretary Prof. Branko Celler 0418 228 297
Email: sari@unsw.edu.au
