We are delighted to say that a record 59 people have booked onto this year’s Outlook Weekend, which takes place from 15 to 17 April at the Oxford Belfry Hotel, Thame. The agenda for the weekend is here http://www.tuberous-sclerosis.org/web-app-events/outlook-weekend thank you to everyone for your
A new booklet has been published for women and girls who are taking valproate medicines. Babies born to women taking valproate during pregnancy are at an increased risk of birth defects and developmental disorders. The booklet can be downloaded here: http://www.medicines.org.uk/emc/RMM.421.pdf Guidance says valproate should
With just a few days to go until the London Marathon we'd like to wish all of our fab runners - Dan Morbin, David Donovan, Hollie Light, Ken Welby and Mark Holland - the very best of luck!! If you'd like to sponsor any of them their
A Novartis Phase III clinical trial has shown that Everolimus significantly controls seizures in TSC patients when taken in addition to the patients' usual anti-epileptic drugs (AEDs). The results of the EXIST-3 (epilepsy) study were presented to a meeting of the American Academy of Neurology
A massive #VLM2016 thank you to our five fantastic @LondonMarathon runners Dan Morbin, David Donovan, Hollie Light, Ken Welby and Mark Holland - who have – between them – raised a whopping  £11,261.68p for us. Their totals, to date, stand at: Dan: £2508 David: £213.75
Our new Tea & SCones for TSC 2016 video, starring the wonderful Collins family (Jessica, Josh, Oska, Ollie, and mum and dad, Victoria and Dale, as pictured below) from Cardiff, is now on our YouTube channel! Please click here to watch it. And if you are
Fundraiser, David Cropper, is running 110 miles for the TSA. Friend to the Dale family, David has decided to run for their son Sam, who has TSC. He is running to support our #Fight4Treatment campaign and has already raised over £1000. Nick Dale, former Trustee
Genetic Alliance UK are currently conducting the 'Hidden Costs' study - a study which is testing the feasibility of researching the costs associated with managing rare conditions. The research team are looking for volunteers to test a 'patient diary' over a period of 2-3 weeks.
Researchers at Cardiff University are pleased to confirm that they will be opening a centre in Glasgow in June 2016 to aid recruitment to the TRON study. This may be of interest to our community in Scotland and Northern England that may have found it
We are delighted to announce that NHS England have released the prescribing policy for the treatment of angiomyolipomas (AMLs) in patients with Tuberous Sclerosis Complex. Please find the policy statement at the bottom of this NHS England page: www.england.nhs.uk/comissioning/spec-services/npc-crg/group-b/b03 You can download the document here
