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
Today we'd like to introduce to you our amazing London Marathon #TeamTSA. Please take a few moments to click on each of their names to read their full stories and to support them with their fantastic efforts as fully as you can, whether that means
Our first ever CEO, Dr Jayne Spink, will be stepping down in April after 5 years with the TSA. Since Jayne joined the TSA we have seen an unparalleled period of growth and expansion, and we would like to offer her our grateful thanks for
The Observer newspaper has run an article on a letter signed by 30 members of the Specialised Healthcare Alliance (SHCA) including the Tuberous Sclerosis Association calling on the Prime Minister Theresa May to address NHS underfunding to tackle the rationing of treatment. Responding to the
We were recently joined by nine employees from top fashion label White Stuff who gave up a day of their time to volunteer for us. The nine - Nick Bradley, Nicola Pollard, Marcel Byfield, Morad Lamaani, Louise Kither, Lauren Husbands, Denise O'Donnell, Fatima Badri and
This year’s Rare Disease Day focus is research. Today, February 28, patient organisations are busy highlighting so much of the fantastic research currently being undertaken to better understand a whole range of rare diseases. We are using this spotlight to share the work of some of those undertaking research into TSC. The
If you are interested in research into TSC, and its impact on wider medicine, then please take a look at this fascinating article by Cardiff University TSC researcher Dr Elaine Dunlop, published in The Conversation. Please click here to read the article in full. Please
Rare conditions affect approximately 1 in 17 people in the UK. Although they are living with lots of different conditions, and only 5% have approved treatments, too many face similar challenges with access to care and medicines. New data included within the Equity and Access report
