Failure of the NHS to fund access to medicines to treat rare conditions such as Tuberous Sclerosis is a major ongoing issue.   Today the Genetic Alliance UK have launched a landmark Patient Charter that highlights the concerns patients have about the new approach the

The National Institute for Health and Care Excellence (NICE) is seeking members for a guideline development group that will be tasked to produce a social care guideline on transition from children’s to adults’ services.  NICE will be recruiting four people with experience of using services,

Cochrane UK and the Critical Appraisal Skills Programme (CASP) have just announced a series of free workshops which may be of interest to those associated with the TSA, in particular those interested in TSC research. The workshops look at using critical appraisal skills to systematically assess and

Sunday 13th April saw 9 runners take part in the London Marathon. We are so proud of all our participants. Here are our runners, their finish times, the funds they've raised already and links to their fundraising pages if they want to support them: Stewart

For the very first time we have taken our Tea and Scones campaign on tour around the internet, to help raise awareness of TS. We invited five brilliant bloggers to share their take on the theme of Tea and Scones across TS Awareness Week. Please visit their

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"