The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK.

The TSA is a registered charity with three charitable objectives:

• To support individuals affected by TSC, together with their families or carers
• To encourage and support research into the causes and management of TSC
• To provide education and information

We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.

TSA strategy 2025–2027

Our strategy for 2025–2027 builds on the successes of our previous plans while setting a bold vision for the future. The next three years are focused on sustainable growth while making ambitious and meaningful progress across all areas of our work.

Our strategy’s goal is to ensure that everyone affected by TSC gets the support, care, and research advancements they need and should expect – now and also in the future. This strategy is shaped by what we’ve achieved in the past and our deep commitment to the TSC community, all underpinned by clear priorities and strong partnerships.

Our mission, vision, and values

Everyone affected by TSC should have the opportunity to live a fulfilling life, free from unnecessary barriers. Our work is driven by a clear mission, an ambitious vision, and a set of core values that shape everything we do.

• Our mission is to provide help for today and a cure for tomorrow. We exist to improve the lives of those affected by TSC through direct support, advocacy, and research
• Our vision is a world where TSC and its effects are conquered—where no one faces the condition alone, and where scientific advancements lead to better treatments and, ultimately, a cure
• Our values guide how we work. We’re passionate about what we do, ambitious in our goals, and always honest and trustworthy in our approach. We’re committed to being sustainable, ensuring the TSA remains strong and impactful for years to come

These values are embedded in our work and reflected in our relationships with the TSC community, healthcare professionals, researchers, and supporters.

Our priorities

Over the next three years, everything we do will align with four key priorities, ensuring we remain focused on making the biggest possible difference:

• Advocacy and awareness. We’ll push for TSC to be recognised as a priority among decision-makers and the wider public. This means influencing policy, advocating for improved access to treatments, and raising awareness of TSC as a serious and complex condition.
• Research. We’ll drive world-class research that leads to better diagnosis, new treatments, and innovative therapies. We’ll also work to ensure people affected by TSC play a central role in shaping research efforts, making sure studies reflect real needs.
• Support and information. We’ll continue to provide high-quality, person-centred support and information, making it easier for people with TSC and their families to navigate daily life. We want everyone affected by TSC to feel informed, empowered, and connected to a supportive community.
• Sustainability. We’ll build on our strong foundations to ensure the TSA continues to thrive. By strengthening our governance, improving the way we work, and adapting to emerging challenges, we’ll remain a stable and effective charity for years to come.