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Our #Fight4Treatment campaign has also been featured on BBC Radio York this morning. You can find out more, and listen to the radio report, here: http://www.bbc.co.uk/news/live/uk-england-york-north-yorkshire-37610513

Our #Fight4Treatment was featured on page 62 of the Mail on Sunday, October 9 - you can read it on the link here. http://www.dailymail.co.uk/health/article-3828549/NHS-accused-abandoning-children-life-threatening-disease-refusing-funds-breakthrough-drug-not-currently-affordable.html            

Julian Sturdy MP Leads Cross Party Group of MPs Lobbying NHS England Over Much-Needed Everolimus Drug A cross-party group of MPs, led by Julian and Greg Mulholland, have written to NHS Chief Executive Simon Stevens urging him to make the Everolimus drug available to those

Please note that from December 23, 2016 to January 3, 2017 we will be offering a reduced cover service.  Should you need to contact a TSA  Adviser, or any other member of staff, over the Christmas and New Year period, please call, or email, that

The European Patients Academy on Therapeutic Innovation (EUPATI) has developed a toolkit to provide information for anyone who is interested in learning more about the medicines research and development (R&D) process. More information can be found in the downloads page of the TSA website: http://www.tuberous-sclerosis.org/download-resources-library.html

Patient experiences of Individual Funding Requests (IFRs) survey. Have you accessed a treatment for TSC through an Individual Funding Request (IFR)? Have you failed to gain access to a treatment that you need via an IFR? Genetic Alliance UK is looking to hear from patients

We are delighted to announce that NHS England will now routinely fund Everolimus for inoperable TSC brain tumours (SEGA). This means that NHS England have reversed their previous decision made this summer when they had reached a decision that Everolimus was ‘unaffordable’. Jayne Spink, Chief

We are planning the workshop topics for the next#TSABigDay in September 2017. Within our remit we have the capacity to run 3 workshops, which we will repeat and the maximum number of people we can have per workshop is around 90. We have run the

Why not volunteer to help us to review our information factsheets? If you can spare some time to read new drafts and send us your feedback in your own time we would really appreciate it. We want to make sure we’re providing the information that