TSA Blog

  • Volunteering and the TSA

    Hi everyone I’m Tanya the new Volunteer Co-ordinator, I am really excited to have joined the TSA, and set up the new volunteering programme. I believe that through volunteering we can give more support and increase our services. I previously worked with volunteers for a number of years in a managerial and front line role, for a large charity where volunteers helped over 55,000 vulnerable young people. They were an essential part of the organisation, and with over 7000 volu.. ...more

  • THE Landmark paper by Andy Tee

    Posted on 22 March by Dr Andy Tee (Scientific Advisor for TS Association, Senior Lecturer in the Institute of Cancer and Genetics, Cardiff University). When I look back, my scientific journey into Tuberous Sclerosis research has been built purely on luck. But as my mentor (Prof. John Blenis) from Harvard always told me during my golden-years as a care-free post-doctoral scientist, ‘you build your luck with hard work’. I have always been a scientific ‘geek’, wh.. ...more

  • Strength In Numbers

    The 6th Rare Disease Day took place on 28 February 2013. Although a disease or condition might be labeled as “rare”, the number of people in Europe suffering from a rare disease is estimated at over 30 million. Almost all people with rare conditions face common problems; delays in diagnosis, lack of investment into research and inequalities in access to treatments and care. Rare disease day gives the TSA an opportunity to join together with other rare disease organisations to .. ...more

  • Rob Vaughan for #trusteesweek

    We asked some of our trustee's to answer some questions about what it's like to be a Trustee for the TSA. Here's what Rob Vaughan, Treasurer, said: Why did you become a trustee of TSA? My daughter suffers from TSC and i wanted to give something back to an organisation that does so much to help suffers of the condition and their families. I felt that my accountancy knowledge and the fact that I work as an accounting in practice may be of some benefit - the financial requir.. ...more