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
The TSA is excited to announce it will again be hosting the International Research Conference in the UK in November 2020. This will bring together researchers, scientists, clinicians and community members from across the globe to hear the latest results of ground breaking research in
TSA campaign to make sure everolimus for TSC-related epilepsy is funded in England In March 2018 NHS England recognised that there is sufficient evidence to commission everolimus for TSC-related epilepsy, which could benefit up to 1,300 people living with TSC. However, in July NHS England
 This is a statement from Tuberous Sclerosis Australia released today (22 August 2018):  We are pleased to share news that Everolimus (Afinitor) for epilepsy has been given a positive recommendation by the pharmaceutical benefits advisory committee (PBAC). This is a recommendation to the
PLEASE NOTE THAT THE SIBLINGS GROUP HAS NOW BEEN CANCELLED. As you may have heard, our annual TSA Big Day event will be taking place this year at Sheffield Hallam University on 10 November 2018. As in previous years, we are providing childcare for those
We are pleased to provide more information about hotels in Sheffield for the Big Day. The TSA will be using the Jury’s Inn, Sheffield for the Board of Trustees’ meeting on Friday 10 November, and this will be the main base for Trustees staying overnight.
This is a recently published paper about TAND in people with TSC; authors include TSA trustees Chris Kingswood and Tom Carter as well as TSA funded researchers and research committee members. As there is very little information about TAND in adults with TSC, this study
