It is with great sadness that we announce to the TSA community the death of Ann Hunt MBE.  Ann came into the world of TSC when her youngest son, James, born in 1971, was diagnosed with the TSC.  At the time, very little was known

Design our TSA Christmas Card Are you 16 or under and part of a family affected by TS? Your artwork could be part of the TSA 2014 Christmas Card collection! Your entry can be in paint, pencil, crayon, or ink. It would be great to

EURORDIS (European Organisation for Rare Diseases) is conducting a survey into the difficulties people are facing in accessing treatment for rare conditions. The survey is in the form of an anonymous questionnaire. Short answers are preferred. The data collected from across Europe will be used

KIDS have launched a new suite of resources to support families and carers of disabled children and young people to help them navigate the reforms to Special Educational Needs and Disability provision. The full suite of resources is available to view on the KIDS website:

The Northern Ireland government's draft implementation plan for the UK Rare Disease Strategy was launched for public consultation on 27th October at a well attended second AGM and Autumn Seminar of the Northern Ireland Rare Disease Partnership held in the Stormont estate in East Belfast.  

Earlier this year we joined forces with the Genetics Alliance and the Association for Glycogen Storage Disorders to petition the National Assembly for Wales to review the use of the exceptionality rule in determining whether a patient can access a treatment through the Individual Patient

We are delighted to announce a new award to support career development of young scientists.  The first Ann Hunt Career Development Award to will support a PhD student working with Professor Petrus de Vries, formerly in Cambridge and now at the University of Cape Town,

NHS England is currently failing to properly support patients with TSC and the dedicated NHS professionals who care for them. It is vitally important that we continue to campaign for implementation of the international TSC guidelines and for access to medicine. Whether you have

On the 15th November 2014 the TSA hosted another successful Family Annual Conference. With specialist workshops on Coping and Caring for those with TSC, Campaigning for fair access to treatment, Physiological Issues and TSC, Behavioural Challenges, Research and ‘Finding your way through the legal maze’

When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be fighting for access in the face of a near total failure in NHS funding in England.      Over the past year