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

We are working to bring you an interesting and informative agenda for the TSA Big Day 2018.  Whilst the timings are still being finalised, we are pleased to give you a flavour of the day through our outline agenda:    TSA Big Day 2018 (Sat

Today [Tuesday October 2] NHS England discussed the evidence that its Clinical Priorities Advisory Group (CPAG) will consider in November when it reviews the decision not to fund everolimus to treat epilepsy for people with TSC in England.  Thank you to all of you who have

This year’s TSA Annual General Meeting (AGM) is being held on Saturday 10th November at 9.15 – 9.45am at Sheffield Hallam University at the start of our Big Day event.  You can find more information about the AGM as well as the following documents http://www.tuberous-sclerosis.org/annual_reports.html

PLEASE NOTE THAT THIS HAS NOW BEEN CANCELLED Did you know we’ll be running sessions for siblings of children with TSC, aged 6 years and over during this year’s Big Day? This is a fantastic opportunity for children to meet others who have a brother

On Monday (October 22) at 4.30pm Members of Parliament will have the opportunity to take part in a Westminster Hall Debate about E-petition 221033 relating to autism and learning disability training for healthcare professionals, sponsored by Daniel Zeichner MP.  https://calendar.parliament.uk/calendar/Commons/All/2018/10/22/Daily This debate is the result