We are excited to announce the launch of RARE TSC (The National Registry for Advancing Research and Engagement in Tuberous Sclerosis Complex). This project aims to develop the UK’s first national research database specifically for TSC, holding medical and health records for every person
The UK Government has published new plans to reform support for children and young people with special educational needs and disabilities (SEND) in England. The plans include potentially major changes to Education, Health and Care Plans (EHCPs) Set to be implemented from 2029 onwards,
The TSA’s Joint Chief Executive, Dr Pooja Takhar, attended the Rare Disease Day 2026 Parliamentary Reception at the House of Commons, bringing together policy makers, charity leaders, healthcare professionals, pharmaceutical companies and members of the rare disease community The event was hosted by Peter
The recent government budget includes several announcements that may affect people in the TSC community. We thought it useful to give a run-down, now the dust has settled Ending the two-child limit Those claiming Universal Credit currently get a ‘child element’, which is an
A new UK study suggests that changes in some genes linked to TSC might trigger inflammation inside the body. This discovery adds a new piece to the TSC puzzle and could influence future research and treatment. We already know that TSC causes a growth-control
The nights are getting longer and there's a frost in the air - it's definitely coming up to the festive season! As part of this, we're delighted to confirm that the TSA's festive cards and goodies for 2023 are now on sale!
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
