Greg Mulholland MP has secured a parliamentary debate entitled ‘Access to drugs for ultra-rare diseases’! It’ll be next Tuesday, 16th June, 2.30pm-4pm, so a whole hour and a half of MPs raising their concerns directly with George Freeman.You can help by emailing and/or tweeting your

When Everolimus was licensed for the treatment of TSC none of us imagined that years later we would still be fighting for access.   Over the past 2 years, the TSA has been supporting the development of a service specification and prescribing policy in the

NHS England has now published the long-awaited urgent and critical need policy. If you or someone you care for has had an individual funding request rejected for access to Everolimus, and their need is urgent, the new policy should be of help to your doctor

When Everolimus was licensed for the treatment of TSC, no-one imagined that more than 2 years later we would be campaigning for access in the face of a near total failure in NHS funding in England.   Now, thanks to the many of you who

When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be fighting for access in the face of a near total failure in NHS funding in England.    Over the past year and

On 17th September, the Welsh Government wrote to NHS Chief Executives across Wales to inform them that an agreement had been reached with Novartis Pharmaceuticals UK Limited for the provision of Everolimus for TSC patients.    This two-year agreement is the first of it’s kind

Be the coolest person you know by downloading the top new Christmas tune  by Midlands musical maestro MerryM'N  which he has penned on behalf of the TSA. ‘I Want Oatcakes (For My Christmas Dinner)’ can be found on YouTube HERE and while you can download it

The awesome people of SoftCat are raising money for the Tuberous Sclerosis Association this Christmas, and will donate £1 for every click they receive to their Christmas site. We could receive up to £5000 – so please click and share. There’s no filling in your

We wish all of our families and individuals a fantastic Christmas break! The TSA will shut down at the end of the working day on the 24th December and reopen on the 4th January. Your Regional Advisor’s voicemail will have all the details of who

The deadline to enter our Outlook 20 Art Competition has now passed and we would like to say a massive thank you to everyone who has submitted a piece of art, photography or creative writing. All entries will be proudly displayed at our forthcoming Outlook weekend