If you or someone you care for has Tuberous Sclerosis Complex (TSC), you may have experienced times when new symptoms of TSC were brushed aside or not fully explored. In fact, you might have even had symptoms completely unconnected to TSC also not taken

Easter can be full of fun activities and a perfect opportunity to go on an egg hunt and to gather the family! However, like many special occasions, Easter can bring challenges for some children and adults, especially those living with TSC. With about half

The UK Government has confirmed new plans to reform disability benefits in England and Wales. This may impact many individuals and families living with TSC. Full details of the government’s plans are not yet available, but we have a good idea of some things

On the 28 February, the Department of Health and Social Care published the England Rare Diseases Action 2025 plan. The plan aims to support people with rare diseases by improving coordination of care, making it easier to get specialised treatment and tackling the challenges

Yesterday, the UK Government's latest Spring Budget included important updates for those in the TSC community - in particular, those who receive benefits like Universal Credit. The changes will mean that some families with TSC who receive benefits have greater freedom and ability to

Professor Darcy Krueger and the TACERN Study Group has revealed that accumulated seizure burden, rather than the age that seizures start, most accurately predicts neurodevelopmental outcomes at 36-months of age Epilepsy affects eight out of every 10 people living with TSC, with seizures often

A garden in aid of the TSA will be unveiled at this year’s RHS Chelsea Flower Show, alongside the TSA releasing an online Tree of Dedication to offer a special way to honour loved ones affected by TSC Landscape designers Jen Donnelly and Catherine

The National Institute of Health and Social Care Excellence (NICE) has approved funding of fenfluramine (brand name Fintepla, developed by UCB Pharma) on NHS England to treat seizures associated with Lennox-Gastaut Syndrome (LGS), a rare epilepsy that some people with TSC also have. This

Scottish decision-makers have announced that fenfluramine (brand name Fintepla, developed by UCB Pharma) can be prescribed on NHS Scotland to treat seizures associated with Lennox-Gastaut Syndrome (LGS), a complex and very difficult to treat form of epilepsy that some people with TSC also have.

Decision-makers in Scotland have agreed to fund Hyftor (topical sirolimus) through NHS Scotland to treat facial angiofibromas (marks and bumps on the face caused by TSC) The TSA is delighted that the Scottish Medicines Consortium (SMC) has recognised that Hyftor (topical sirolimus) is an