The American Thoracic Society (ATS) and the Japanese Respiratory Society (JRS) have published new clinical practice guidelines for the diagnosis and management of lymphangioleiomyomatosis (LAM), a rare lung disease that primarily affects women of child-bearing age and is associated with … Read More
Topical Rapamycin is an experimental treatment for facial angiofibromas, which affect the majority of people with Tuberous Sclerosis. A formal clinical trial, funded by generous donors to Tuberous Sclerosis Australia, has completed at Sydney Children’s Hospital which aims to provide … Read More
Tuberous Sclerosis Australia, with thanks to the TSC Heroes, are proud to support this research project. Our partner in this project is the Australian Mitochondrial Disease Foundation and the research is being conducted by the Australian Paediatric Surveillance Unit, part … Read More
A report from the 2015 International TSC Research Conference in Windsor, United Kingdom September 10-12th. From Treatment to Prevention, the global TSC research community asks if postponing the complications of TSC indefinitely is the path to a cure for TSC.
Tuberous Sclerosis Australia has published two new resources to help individuals with TSC and their families understand new medicines for TSC. Names of mTOR inhibitor medicines include Afinitor, Everolimus, Sirolimus, Rapamune, and Rapamycin. Read our updated information page on mTOR … Read More
Tuberous Sclerosis Australia (TSA) was represented at the recent international TSC research conference in Windsor, UK. This included presentation of results of the TSC family survey conducted by TSA in 2014. Thanks again to all the families who responded. Download … Read More
Australian researchers continue to drive our local TSC research agenda Our dedicated clinical researchers in Australia are currently running and planning the following studies: Ten Australian patients have been enrolled in the international Exist-3 study. This international randomised clinical trial … Read More
Mothers of children with Tuberous Sclerosis living in Western Australia are invited to be interviewed as part of a new research project at Curtin University. The researchers are particularly seeking families where the child’s diagnosis came with no family history … Read More
TAND stands for TSC Associated Neuropsychiatric Disorders and refers to the wide range of cognitive, behavioural and mental health challenges that people with TSC are at risk of. For many people with TSC the TAND aspects of TSC are of greater concern to them and their families than the medical aspects of TSC.
Today the Federal Minister for Health, the Hon Peter Dutton, announced that the cost of Everolimus for Tuberous Sclerosis will be subsidised by the government through the pharmaceutical benefits scheme (PBS). This medicine is approved in Australia for the treatment … Read More