The first ever official international recommendations on the diagnosis and treatment of TAND were recently published. This is an important milestone in TSC-Associated Neuropsychiatric Disorders, but what will the recommendations actually mean for people with TAND? Published in Journal of Neurodevelopmental Disorders, the international

The TSA is proud to be a significant funder to TSC research around the world. We recently partnered with Epilepsy Research Institute UK to unlock completely new TSC research. The lead researcher of the project, Dr Amanda Almacellas Barbanoj, tells us all about her

An exciting new project has been launched to better understand different challenges in rare diseases. Led by Kings College London, researchers will focus on the rare diseases that are connected to part of the body called the 'mTOR pathway'. The TSA is proud to

We recently earned accreditation with the Patient Information Forum, which confirms that the information we provide is of very high quality The Patient Information Forum (PIF) is a non-profit organisation that reviews print and online information focused on health and care information. PIF award

The TSA is seeking a highly experienced, confident and capable Head of Fundraising to provide leadership and direction on all aspects of income generation. This is an exciting time to join a small but hugely impactful charity where you will make a real difference

The Specialised Healthcare Alliance (SHCA) has released an important report highlighting the obstacles people face in getting diagnosis of a rare condition, with recommendations included on how this can be improved. As a proud member of the SHCA, we wholeheartedly endorse this proactive call

The TSA Support Fund is our emergency grant for people in the TSC community, providing emergency support when the financial costs of being affected by TSC become too much to handle. Following a massive number of enquiries, we're now struggling to keep the fund

We recently asked the TSC community to share their experiences of TSC and mental health challenges. Rae, who is aged 21 and was diagnosed with TSC when they were one, took the time to tell us their story: "Hi, my name’s Rae, and I’m

Tantrums, harm, and abuse are just some of the actions that fall under the category of "behaviours that can be challenging." This is a common obstacle in the lives of people with TSC. What are ‘behaviours that can be challenging’? A behaviour is deemed