The TSA is really pleased to hear of such positive results from a recent trial of topical rapamycin for the treatment of facial angiofibromas. The study, which took place in America and Australia and more details of which you can find on the link below,
A double-blind, randomized, placebo-controlled study to investigate the efficacy and safety of Cannabidiol (GWP42003-P, CBD) as add-on therapy in patients with Tuberous Sclerosis Complex who experience inadequately-controlled seizures NCT02544763 How long is the study? Study length: 5 weeks of baseline and 16 weeks of treatment
 MEDIA RELEASE The Scottish Medicines Consortium (SMC) has announced today [Monday, 11 June] that everolimus will be available on prescription to treat refractory epilepsy in people aged two years and older with Tuberous Sclerosis Complex (TSC) in Scotland.  Maxine Smeaton, Chief Executive of
 The Clinical Priorities Advisory Group (CPAG) makes recommendations on NHS England’s approach to commissioning services, treatments and technologies, and considers which of these should be prioritised for investment. Its scope includes all specialised services provided by NHS England. The advisory group assesses drugs, medical
Many of our community will have seen the ongoing debate in the British media about the use of cannabis for medical purposes, in particular in the treatment of epilepsy. This will undoubtedly raise questions for many people as to whether this could be a help
The TSA welcomes the announcement by the Scottish Government of £5m investment into the Children and Adolescent Mental Health service in Scotland.  Clare Kassa, Head of Information and Support for the TSA said: "We know that many of the children and young people we support
 NHS England has announced today [Saturday 7 July 2018] that it will not fund everolimus for the treatment of refractory epilepsy for people with Tuberous Sclerosis Complex (TSC) in England. The announcement comes less than a month after the Scottish Medicines Consortium (SMC) recommended
A sincere thank you to everyone who has been in touch with us since Saturday, July 7, when news broke of NHS England’s decision not to fund everolimus for uncontrolled epilepsy in TSC. We appreciate this is very disappointing and frightening news and greatly value your
We know that NHS England's decision not to fund everolimus for uncontrolled epilepsy will potentially have an impact on the health and wellbeing of members of the TS community. As you know everyone's condition is unique and people are affected in different ways and so
 Today (Friday July 27) specialist doctors in the UK will be able to legally prescribe cannabis-derived medicinal products by the autumn, Home Secretary Sajid Javid has announced. According to media reports, those that meet safety and quality standards are to be made legal for
