With the theme of research, and the slogan, 'With research, the possibilities are limitless', Rare Disease Day 2017, at the Scottish Parliament, was an opportunity to call on all researchers universities, students, companies, policymakers and clinicians to do more research and to make them aware
The Equality and Human Rights Commission (EHRC) want to hear directly from disabled people and relevant organisations in England, Scotland and Wales to help them to understand whether the availability of accessible and adaptable housing and the support services around it fulfils disabled people’s rights
Huge thanks to Carmarthenshire-based TSA Ambassador Marie James, and her husband Perry James, a member of the TSA's Research Committee, who attended the Genetic Alliance UK Rare Disease Day 2017 reception at the Senedd in Cardiff Bay on February 14. Speakers included: AM Darren Millar
Recently, the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions published a report which showed that the UK Strategy for Rare Diseases is not being implemented effectively in England. You can read the full report online on the Rare Disease UK website. The
Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan for the commitments outlined in the UK Strategy for Rare Diseases that it can influence by the end of the year. For those commitments that are outside
We are delighted to inform the TSC community, researchers, charity collaborators and volunteers that we have appointed our second ever CEO. Louise Fish has a genuine desire to improve services and support for people living with health conditions and their families, and this has been
Louise Fish is to join the Tuberous Sclerosis Association (TSA) as its new Chief Executive. Louise, a former Director of Communications at NICE, Director of Communications and Engagement at the NHS Confederation and,most recently, a Senior Director with Tonic Life Communications, will join the TSA
It's just 10 days to go until the Virgin Money London Marathon 2017 and our six amazing London Marathon #TeamTSA members are all getting ready to run for us at this iconic event, helping to raise funds to fight TSC as well as raising awareness
 Today we see Sarah, Darren, Nicholas A, Nicholas M, Neil, Steven and Graham - our amazing seven members of #TeamTSA - take on the Virgin Money London Marathon 2017. There is still time to read their full stories and to support them with their
 Today we are thrilled to able to tell you all that a massive £18,109 has been raised for us by our incredible seven #TeamTSA heroes of the 2017 London Marathon – Sarah Bell, Nicholas Annear, Nicholas Myerson, Darren Pascoe, Steven McCloy, Neil Henderson and
