International guidance for the diagnosis and management of Tuberous Sclerosis Complex (TSC) has been updated. The refreshed guidance now gives a greater focus on early surveillance, TSC-Associated Neuropsychiatric Disorders (TAND) and new treatments recently approved internationally for TSC. The need to update international guidance

The road to understanding how TSC affects you or a loved one following a diagnosis can be confusing, frustrating and very difficult. The TSA is here for everyone at all stages of their TSC journey - including the opening days, weeks and months -

Following the International TSC Research Conference 2021 (ITSCRC2021), which took place 17-19 June 2021, the TSA is delighted to share the ITSCRC2021 community recap page. The recap page provides an overview of the exciting research that took place at the conference, including exclusive videos

This article was originally published in an issue of our community magazine, Scan. There are an estimated 13.6 million unpaid carers in the UK, including many people in the TSC community who care for a loved one who lives with TSC. Being a carer

Marinus Pharmaceuticals has released positive initial results of ganaxolone in TSC-related epilepsy, with the phase 2 trial demonstrating a reduction in seizure frequency in people living with TSC-related epilepsy. The encouraging findings pave way for a larger study of the medicine, expected to begin

As summer draws to a close, it's the time when schoolchildren and others in education across the UK are preparing (or have recently) returned to learning. For those affected by TSC, a quick check that everything has been prepared for the new academic year

A new survey, developed in partnership with the TSA, is investigating the experiences of living with facial angiofibromas (FA) and TSC. This research, conducted by a research agency on behalf of a pharmaceutical company, could uncover vital information on the needs of people who

As we have done throughout the covid-19 pandemic, the TSA is working hard to provide clear and easy to understand information regarding covid-19 booster and third jabs. Here, we provide an overview on both jabs, and what they might mean for the TSC community.