Genetic Alliance UK are currently conducting the 'Hidden Costs' study - a study which is testing the feasibility of researching the costs associated with managing rare conditions. The research team are looking for volunteers to test a 'patient diary' over a period of 2-3 weeks.

Researchers at Cardiff University are pleased to confirm that they will be opening a centre in Glasgow in June 2016 to aid recruitment to the TRON study. This may be of interest to our community in Scotland and Northern England that may have found it

We are delighted to announce that NHS England have released the prescribing policy for the treatment of angiomyolipomas (AMLs) in patients with Tuberous Sclerosis Complex.  Please find the policy statement at the bottom of this NHS England page: www.england.nhs.uk/comissioning/spec-services/npc-crg/group-b/b03  You can download the document here

NEWSFLASH... Six places to take part in this September's Great North Run are still available to runners from across the UK who would like to complete this iconic event and help raise funds to fight TSC. With only a week to go before registration closes

Are you under 16 years old and either have TSC or have someone in your family with TSC? Then why not grab your art gear, get creative and enter our Christmas card design competition? If you win, not only will you feature in our Christmas

NHS England devastating U-turn on drug treatment for brain tumours Last year NHS England promised to develop an in year policy for the use of Everolimus to treat SEGA (brain TSC related tumours). This month, NHS England broke that promise and is saying this drug

Here is the text in full of the letter published in today's The Times newspaper, in which NHS consultants express their shock and disappointment at NHS England's recent decision regarding the provision of Everolimus for inoperable SEGA tumours. Please take a few minutes to read

  Today we are absolutely delighted to be able to announce the winner of this year’s children’s design a Christmas card competition... and it is four-and-a-half year old talented artist and big sister extraordinaire Ava Morgan, who lives in Bingley, Yorkshire. Ava's Mum Amy explains:

NEWSFLASH Our #Fight4Treatment has made The Daily Express newspaper today with an compelling interview with Samantha-Jayne Harding, mum of Toby-Jay, who has TSC, of Westcliff. If you would like to sign our e-petition then please click here.

  We are thrilled to be able to tell you that this year we are fielding our biggest number of runners ever to tackle the iconic Great North Run for us on Sunday, September 11. Here is a list of all our 17 Great North runners,