About this study This study describes the clinical and genetic characteristics, management and quality of life of adults with Tuberous Sclerosis Complex (TSC), who had been diagnosed in adulthood compared to those diagnosed in childhood. This Spanish study of 57 … Read More
Cardiac rhabdomoyomas and TSC Cardiac rhabdomyomas (CRs) are non-cancerous tumours in the heart. Both single and multiple CRs are a major diagnostic criteria for TSC, with the likelihood of TSC diagnosis varying depending on the number of CRs. Multiple CRs … Read More
TSA’s next Zoom Education Event is on Tuesday 27 July 2021 at 7pm AEST. Topic: Autism (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Presenters: Vinita Prasad, Developmental Paediatrician and John Tracey, Child Development Nurse Navigator for ASD, Queensland Children’s Hospital, … Read More
Flinders University Medical School is conducting a research project into how TSC patients and their carers are impacted by the disease, and how the medical system can best help. See below for more information. If you think you’d like to … Read More
We’re looking for a digital communications assistant to support our website and social media communications. If you have 2-3 hours per week available, have an eye for detail and are a whizz with websites, Facebook and the like, then we’d … Read More
Back in 1981 Lynn Wilson sent a letter to New Idea calling for families living with Tuberous Sclerosis Complex to get in touch with her. Forty years later, the same magazine has featured the story of TSA’s founder. Thank you to New Idea for printing Lynn’s story and thank you to the many volunteers over so many years who have helped make sure that everyone in Australia living with TSC has someone and somewhere to turn to.
Dr Kate Riney and the team at Queensland Children’s Hospital are currently recruiting patients for a formal phase II/III trial of topical rapamycin (sirolimus) for facial angiofibromas. Some funding for interstate travel is available, making this trial available for eligible … Read More
The TSC Conference is now just 2 weeks away. We have a fantastic line up of expert speakers who will get you up to date with all the latest research and treatment options. Scan the QR code for details. This … Read More
The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Nominations for the 2021 Award close on … Read More
Epilepsy develops in 70-90% of children with TSC and it is often resistant to medication. This study investigated the potential benefits of early (preventive) treatment with vigabatrin to prevent TSC-related seizures.