Purpose of this study This study aimed to assess whether prenatal diagnosis of TSC and early intervention are correlated with better developmental and epilepsy-related outcomes than postnatal diagnosis. About this study This was a retrospective, single-centre study of children with … Read More
Context Previous studies have estimated the incidence of Autism Spectrum Disorder (ASD) to be 17%-61% in children with TSC, and the incidence of epilepsy to be 70%-90%. Several studies suggest 60%-80% of people with TSC experience their first seizure within … Read More
TSA’s AGM All members are invited to attend the Annual General Meeting (AGM) of Tuberous Sclerosis Australia Inc. which will be held via zoom on Saturday 5 November at 2pm AEDT. If you would like to attend the AGM, please … Read More
Thank you to everyone who joined our discussion last week on the health care of adults living with TSC. It was great to see so many of you on the call and thank you for all your excellent ideas and … Read More
Thank you to everyone who completed our TSA Survey 2022. We appreciate the time and effort you have put in to tell us what you think about the services we provide for the TSC Community in Australia. We will be … Read More
About this study Treatment with mTOR pathway inhibitors is important in drug resistant epilepsy (DRE). This study sought to evaluate the safety and efficacy of 12 months of Rapamycin treatment in 32 paediatric patients aged from 11 months to 14 … Read More
TSA is delighted to announce that Kathryn Santamaria, Epilepsy Nurse Consultant at Royal Children’s Hospital in Melbourne is the winner of the 2022 Elizabeth Pinkerton Memorial Award. This award is given annually by TSA to a health professional in recognition … Read More
About this study The TuberOus SClerosis registry to increase disease Awareness (TOSCA) Post-Authorization Safety Study (PASS) was a non-interventional, multicenter, safety study that assessed the long-term safety of everolimus in patients with TSC in the European Union. The secondary aims … Read More
TSA is hosting a discussion about the health care care of adults living with TSC on Wednesday 14 September 2022 at 7pm AEST We know that the often fragmented nature of health care for adults living with TSC continues to … Read More
The TSA Survey 2022 is now open. Just click the link or scan the QR code. We would like EVERYONE in our TSC Community to please take a few minutes to complete our 2022 survey. Whether you’re a long-time supporter … Read More