Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and RD-UK at the UK level.  The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’

As an organisation made up entirely of home-based staff the TSA has, for a number of years, relied on various and changing PO Boxes for donations and other post.  We have found that our reliance on PO Boxes can cause significant problems, for example when

TSA partners with BMJ - Learning to educate professionals about TSC.  Timely diagnosis and treatment of any complications are key to ensuring the best possible outcomes for people with TSC.  Not all healthcare professionals learn enough about TSC when they are training to enable them

The Association of British Pharmaceutical Industries (ABPI) has commissioned a survey to find out about patient and carer views and experiences in relation to accessing medicines (in the case of TSC, accessing Everolimus). The findings of the survey will be used to raise the profile

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