Everolimus granted European Licence for renal AML Everolimus (trade name Votubia®) has been approved by the regulators for use in the European Union for the treatment of angiomyolipomata (AMLs) in adults with TSC, when embolisation or surgery is not immediately needed. Everolimus belongs to a

Tuberous Sclerosis Association is a proud supporter of the 2012 Big Fun Run series. Over 1,500 people have participated so far and the feedback to date is very positive – numbers are up and the fun factor is high! The Olympics seem to have inspired

Here are 31 Facts about TSC: 1.    TSC is genetic disorder that causes tumors to form in vital organs. 2.    It is estimated that TSC affects 1 in 6,000 births. 3.    More than 1 million people worldwide have TSC. 4.    TSC is the leading genetic

The Hft Holiday Information guide is a resource packed full of ideas and information regarding holidays for people with learning disabilities. The guide includes: Pre-booking information Information on guides provided by other organisations Tour Operators Places to stay in the UK and abroad Meeting specialist

If you are having problems with finding travel or life insurance, please click here for Insurance information from the Genetic Alliance. The Genetic Alliance have found these insurers often have helpful policies for patients who have had difficulties with insurance: Travel: Insurancewith Life: AllClear The Genetic

Merseyside Support Group The group meets every other month at the Neuro-Support Centre in Liverpool. It provides support and information to those with Tuberous Sclerosis Complex and their carers in an informal setting. It’s a chance to get together with others and have a chat

In this double-blind, placebo-controlled, phase III trial patients ≥18 years with ≥1 angiomyolipoma ≥3 cm in its longest diameter (based on radiological assessment) and a definite diagnosis of TSC or sporadic lymphangioleiomyomatosis were randomised 2:1 using an interactive web response system to receive oral everolimus

Please note that the correct address for sending any fundraising cheques to the TSA is: Tuberous Sclerosis Association PO Box 4923 Sheffield S2 9EU We would be grateful if you could always ensure you write your own address (sender’s address) on the back of the

Sibs, the UK charity for siblings of disabled people, has launched the first ever UK wide online service for siblings of disabled children. YoungSibs will provide young siblings with much needed information and support whilst they are growing up with a disabled brother or sister.

The reason for this survey is to find out  what  people with TSC and their families think of  the TSA.  We  want  to  know whether  we are doing the right things.We  also  want  to  know whether  there  are  things  we  could  do  differently  or  better.