This year’s Rare Disease Day focus is research. Today, February 28, patient organisations are busy highlighting so much of the fantastic research currently being undertaken to better understand a whole range of rare diseases. We are using this spotlight to share the work of some of those undertaking research into TSC. The

If you are interested in research into TSC, and its impact on wider medicine, then please take a look at this fascinating article by Cardiff University TSC researcher Dr Elaine Dunlop, published in The Conversation. Please click here to read the article in full. Please

Rare conditions affect approximately 1 in 17 people in the UK. Although they are living with lots of different conditions, and only 5% have approved treatments, too many face similar challenges with access to care and medicines. New data included within the Equity and Access report

It's just one month to go until the Virgin Money London Marathon 2017 and our six London Marathon #TeamTSA members are all doing a fantastic job raising funds to fight TSC as well as raising awareness of the condition. Please take a few moments to

A carers assessment is a chance to discuss your needs with your local council. The assessment is free and your local council will use it to decide what support to give you. Don't be put off by the word 'assessment'. It is not a test

Scottish Intercollegiate Guidelines Network (SIGN) - has developed a new booklet for young people of high school age who may have autism, or have already been diagnosed with autism. It explains the advice for healthcare professionals on how to help people with autism. It looks at

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