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.

Having been closely involved with the project from inception, the TSA is delighted to report that the TESSTAL clinical trial of Sirolimus has been published in the academic press*. As a phase 2 trial, it was designed to investigate how effective and safe the drug

Votubia® (everolimus) Fact Sheet What is Votubia® (everolimus)? Votubia® (everolimus), is a prescription-only medicine for patients at least three years of age with subependymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis complex (TSC) who require therapeutic intervention but are not amenable to surgery. Votubia

The Tuberous Sclerosis Association (TSA) is delighted that the drug Votubia® (Everolimus) was launched in the UK today, to provide a treatment option for people with Tuberous Sclerosis Complex (TSC) who have growing non-malignant brain tumours which are not suitable for removal by surgery. Everolimus, which

Posted on 10th January, 2010 With your help, the possibility of a cure is closer than ever. As TSC is a significant genetic cause of epilepsy and autism, every pound raised to find a cure and better treatments for Tuberous Sclerosis Complex can also mean a

Yorkshire 3 Peak Challenge 22nd June 2013 £35 per person Dust off those walking boots, rinse out those flasks and get those packed lunches ready! Join us for this new summer challenge event taking in some of the UKs most beautiful scenery, and make new

Don’t miss Channel 4’s Born to be Different Series on Channel 4 on 14th and 21st March at 9pm. The programme follows 6 children born with different disabilities and every few years an update on the children’s progress is filmed. The series features William Davis,

Tuberous Sclerosis Association Grant Round 2013 The TSA invites research applications for the following types of funding: Junior Fellowships Project Grants If you have any questions regarding the application process, please e-mail research@tuberous-sclerosis.org Junior Fellowships TSA Fellowships awarded to outstanding scientists who are in the early

Last year the Government consulted on a UK Plan for Rare Diseases, which recognised the need for Centres of Excellence.   The UK plan said that Centres of Excellence should have the following characteristics: Coordinated Care Adequate caseload for expertise Not dependent on a single clinician;