Rare Disease Day, 29th February 2016 We are expecting that NHS England will give their decision on whether the NHS in England will fund Everolimus for TSC patients with SEGA’s and AML in March.  We want the voices of people with TSC to be heard,

The NHS is now carrying out a consultation on the provision of Everolimus to treat SEGA tumours. It is very important that as many people as possible within the TSA community in the UK - people with TSC, family, carers, friends and colleagues - respond

  PEOPLE with Tuberous Sclerosis, their carers, friends and family are invited to attend a free meeting on Saturday, March 12 where they can find out more about their condition and the support which may be available to them. The venue is Hollymoor Centre, 8

TSC Awareness Week May 9 to 15 TSC Awareness Week 2016 is almost upon us and we’d love as many of you as possible to enjoy a Tea & SCones party during this week – raise some funds for us in the process and raise

Kelly Gibson of Dumfries is the latest winner of our £300 quarterly Janet Medcalf Award.  Kelly says: "We live in Dumfries and run two busy businesses.The Waterfront Takeaway is on the Whitesands and was completely flooded during Storm Frank last December. The water was 4

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