Patient experiences of Individual Funding Requests (IFRs) survey. Have you accessed a treatment for TSC through an Individual Funding Request (IFR)? Have you failed to gain access to a treatment that you need via an IFR? Genetic Alliance UK is looking to hear from patients

We are delighted to announce that NHS England will now routinely fund Everolimus for inoperable TSC brain tumours (SEGA). This means that NHS England have reversed their previous decision made this summer when they had reached a decision that Everolimus was ‘unaffordable’. Jayne Spink, Chief

We are planning the workshop topics for the next#TSABigDay in September 2017. Within our remit we have the capacity to run 3 workshops, which we will repeat and the maximum number of people we can have per workshop is around 90. We have run the

Why not volunteer to help us to review our information factsheets? If you can spare some time to read new drafts and send us your feedback in your own time we would really appreciate it. We want to make sure we’re providing the information that

We are upgrading our computer systems and this means that there will be a temporary interruption to our normal email service from 4pm on Wednesday, January 18 to 9am on Wednesday, January 25. You will still be able to email all TSA staff during this

It's Rare Disease Day 2017 on February 28 - the day during which as many people as possible who are affected by rare diseases in any way aim to increase awareness with policy makers and the public of rare diseases and their impact on the

The TSA is 40 years old this year and we would like you to help us to celebrate this fantastic milestone in our history. Throughout 2017 we will be running a series of #TSA40fundraising dedicated fundraising events and opportunities - please look out for the

A Happy New Year and a huge thank you to everyone who has volunteered for the TSA last year, including those of you who have attended awareness events and have run regional group meetings. Your help and commitment are invaluable and I look forward to

The Outlook weekend will be held on Friday 22 and Saturday 23 September 2017 in The Belfry, Oxford. The TSA Big Day and AGM will be held on Saturday 23 September 2017 also in The Belfry, Oxford. Bookings for both events will be open later

Everolimus (trade name Votubia®) has been approved by the regulators for use in the European Union as a treatment for refractory partial-onset seizures in children (aged 2 years and older) and adults with TSC.The term “refractory” refers to seizures that have stopped responding to other