We have submitted feedback to NICE on the draft policy document regarding Everolimus for Epilepsy and the integrated impact assessment. Our CEO Maxine Smeaton has this week received notice that the Scottish Medicines Council is also about to open its consultation, and the TSA will

  People with hidden disabilities could soon have greater access to blue badges under plans announced by Transport Minister Jesse Norman on 21 January 2018. The proposals, which could see the biggest changes to the system since the blue badge was introduced in 1970, would

Wednesday February 28 is Rare Disease Day 2018 and we would like as many people as possible who are affected by TSC to mark this day to help raise awareness of rare diseases amongst the general public and decision-makers about rare diseases and their impact

  Have you ever left the GP not quite knowing what they have said to you? Treat Me Well is Mencap's new campaign to transform how the NHS treats people with a learning disability in hospital. The TSA is right behind Mencap's Treat Me Well campaign

The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with NKS locks can be found in shopping centres, pubs, cafes, department stores, bus and train stations and many other locations in most parts of the

  A new guide for parents to help improve the well-being of young children with learning disabilities has been published by Professor Richard Hastings, of the University of Warwick. You can read it by clicking HERE. Professor Hastings and his team are keen to hear

With much of the UK affected by snow and freezing temperatures this week if you are on a low income it is possible that you may be entitled to a cold weather payment. You can find out if you qualify for a cold weather payment

  We are delighted to say that NHS England’s draft policy recommends funding the drug for patients aged two years or older with TSC-related seizures. The exact wording of the draft policy states that: “Everolimus may be given to patients aged two years and older

Ann Hunt was one of the founder members of the Tuberous Sclerosis Association and a pioneer of research into TSC. Dr Chris Kingswood, one of the TSA's Trustees, and himself award-winning researcher into TSC, has written this moving and inspirational tribute to her which is

Are you a budding rock star with TSC? Do you play in a band? And do you fancy recording a song for us? If you have answered 'yes' to these three questions, then please email sarah.roberts@tuberous-sclerosis.org with your name, age, address, phone number and details