It's time to #Fight4Treatment Having strongly suspected that access to Everolimus was poor in the UK, the TSA filed Freedom of information requests to find out how many individual funding requests had been received and how many approved over the past 12 months. We now

We're delighted that Tea Palace, the luxury tea company, have kindly donated one of their divine afternoon tea hampers to the Tea and Scones campaign this year. To be in with a chance of winning this beautiful hamper, all you have to do is hold a Tea

Submission from the Tuberous Sclerosis Association (TSA) About Tuberous Sclerosis Complex 1.         Tuberous sclerosis complex (TSC) is a genetic condition affecting an estimated 500 people Wales.  TSC is a multi-system disorder that can lead to growths in different organs of the body (brain, heart, eyes,

It's Volunteers Week on the 1-7th June, so get involved! Send us your stories or information on how you are already helping others with TS. There are lots of different roles to suit your life style, maybe you like a coffee and a chat? If

For patients with rare conditions, such as TSC, demonstrating that you are exceptional is practically impossible. The TSA has joined forces with Genetic Alliance UK, and the Association of Glycogen Storage Disorders to petition the Welsh Assembly to review the use of the "exceptionality rule"

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.