First UK clinical guidelines for Tuberous Sclerosis Complex will drive higher quality and more consistent care from the NHS The Tuberous Sclerosis Association (TSA) is delighted to announce the publication of the first UK clinical guidelines for the management and surveillance of Tuberous Sclerosis Complex

We have been told that the Clinical Priorities Advisory Group have now met and have made their recommendations to NHS England – although as yet we do not know what that decision is. We have been given to understand that NHS England will share this

GW Pharmaceuticals have announced that data from a phase III US clinical trial of Epidiolex (a cannabidiol oral solution) in people living with tuberous sclerosis complex (TSC) is expected in the first half of 2019. Epidiolex is currently approved in the United States as a

  The TSA office will be closed for the 2018 Christmas period between Tuesday 25 December 2018 and Tuesday 1 January 2019. Although some members of the team will still be around during some of this time, responses from us may take longer than usual

The TSA is delighted to announce that NHS England has backed recommendations from the Clinical Priorities Advisory Group to fund everolimus for the treatment of refractory epilepsy in people with Tuberous Sclerosis Complex (TSC) in England. Everolimus will be funded from April 2019. NHS England’s

NHS England has launched its ‘Long Term Plan’, which sets out NHS England’s priorities and objectives for the next 10 years to ensure that it is ready for the challenges of the next decade. The Long Term Plan includes information on care for people with

The TSA is sorry to hear that Professor Sue Povey, whose ground-breaking genetics research into TSC led to major advances in our understanding of the condition, has sadly passed away. Most recently Professor Emeritus of Human Genetics at University College London, Professor Povey was a

Register your place at the TSC patient conference - Understanding TSC-Associated Neuropsychiatric Disorders (TAND) - taking place at Belfast City Hospital on Friday 25 January 2019, 09:15 - 16:15. The conference will feature a full day of varied and interesting talks and workshops from a

The TSA is delighted to confirm that Outlook 2019 will take place on Saturday 18 May in Bristol, at the Mercure Bristol Holland House Hotel. Outlook is a free event for adults living with TSC, offering the opportunity to make new friends (and meet with

It was with great sadness that we brought you news earlier this month that Professor Sue Povey, a pioneer in the field of genetics and TSC, had passed away. Here Professor Julian Sampson (Director, Division of Cancer and Genetics, Cardiff University and Professor Sue Povey’s