Unfortunately, in recognition of the evolving situation and the risks stemming from the Coronavirus pandemic (COVID-19), we have made the disappointing but necessary decision to cancel the TSC Conference due to take place in Sydney on 2 and 3 May … Read More
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 aim of this study was to assess the efficacy and safety of treatment of an mTOR inhibitor in children under 2 years of age. Seventeen children who received early treatment with an mTOR inhibitor were included. The children had … Read More
While most paediatricians and child neurologists have become good at identifying and treating the physical manifestations of TSC, it remains difficult to identify and treat the neuropsychiatric issues commonly associated with TSC. Why the TAND checklist was developed In 2012, the … Read More
Up to 90% of patients with TSC have epilepsy and in over half of those, seizure control cannot be achieved by regular antiepileptic drugs. This is commonly known as uncontrolled, refractory, intractable, or drug-resistant epilepsy. Everolimus and sirolimus are both mTOR-inhibiting drugs … Read More
Thanks to everyone who has already completed TSA’s 2019 survey. This is the last week to give us your feedback. Please follow this link to fill out the survey: https://www.surveymonkey.com/r/TSASurvey2019 Everyone who participates in this survey has the opportunity to go into the prize draw to … Read More
Rare Voices Australia (RVA) has just launched a new report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. The report highlights significant unmet need and a need for the health and disability sectors to collaborate to … Read More
We are thrilled to announce our first Sydney Comedy for a Cure raised almost $27,000. What a great night! Almost 200 guests gathered at Paddo RSL on Saturday 26 October to raise vital funds to help Australians living with Tuberous … Read More
The October 2019 edition of Reach Out is now available to read online. This issue’s contents include: Welcome Kim, TSA’s new Nurse The Value of Connections Research News If you would like to receive Reach Out by post, sign up … Read More
TSA’s Annual Report for 2019 is now available. The report charts our activities and successes this year which have been made possible thanks to the support of our fantastic TSC community. In response to feedback from our members about good … Read More