The Tuberous Sclerosis Association

Who we are

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.

For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’

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.

Our five-year strategy

The TSA has a five-year strategy covering the period 2019-2023 to REACH more people, drive more REseArCH, and balance the books to secure the long term future of the charity.

Our vision is a world where TSC and its effects are conquered.

Our mission is to provide help for today and a cure for tomorrow.

Our strategic aims (what we will do) are to:

• Make a positive impact on the health and wellbeing of people living with TSC and their families and carers
• Lead research into tools, technologies and treatments which eliminate the effects of TSC
• Lead innovation in the integration of medical and social care services

Our strategic objectives (how we will do it) are to:

1. Provide good quality, easily accessible and timely information about TSC and about living with the condition
2. Provide the opportunity for people with TSC and their families to connect, support and learn together
3. Capacity build the knowledge and expertise of professionals working with people with TSC
4. Drive the research agenda with the aim of improving outcomes and quality of life for people with TSC
5. Expand our understanding of the condition to accelerate diagnosis, intervention and development of new treatments
6. Disseminate and use evidence to influence NHS policy and practice
7. Campaign for better access to treatments and care from the NHS
8. Support the development of centres of excellence for supporting people with TSC and their families
9. Pilot, then roll out, innovative approaches to whole person, family and carer support

Our enablers (the things that will make it possible) to deliver the strategy are:

• Effective teamwork by staff working together to achieve a shared vision
• High quality, integrated financial management
• Digital transformation and smart working to reach more people
• An enterprising approach to income generation to drive more research
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Our values (the things we believe are important) are to be inclusive, ambitious and effective.