Accessing support from the Tuberous Sclerosis Association

The Tuberous Sclerosis Association (TSA) is in a time of transition as we build up to the launch of our new support service in January 2020. The changes to our support services include asking our advisers to move away from focusing on specific regions to instead supporting the TSC community UK-wide, in anticipation of the new service launch.

Some of our regional advisers – Christine Beal (North), Kendra Rhodehouse (Midlands), Lynn Shields (Scotland) and Maureen Tossi (London and South East) – have now left the TSA. They go with our heartfelt thanks and best wishes for all of their hard work supporting the TSC community. 

The TSA’s Support and Information Services team, including experienced advisers, remain eager to help support the community with all TSC enquiries. Below, we explain how to access our support services between September 2019 – December 2019 and also from 2020 onwards. 

Accessing support from September 2019 to December 2019

All enquiries from now until the end of 2019 should be directed to the TSA's Head of Support and Information Services, Rachael Wyartt:

Phone – 0300 222 5737

Rachael will log all enquiries and direct them to the TSA’s Support and Information Services team to respond. Our experienced team of advisers have many years of experience in working directly with the TSC community.

All enquiries to the Support and Information Services team will continue to be handled in strict confidence.

Common questions and answers about our support services between now and January 2020 can be found here.

The Support and Information Services team is home-based, with Melanie Feek, Ellie Russell, Claire Kirk and Julie Rainer continuing to provide experienced support. You can find more information about each member available here.

Accessing support from January 2020 onwards

The TSA’s latest announcement on the upcoming changes can be found here.

Between 15,000 – 44,000 people in the UK are affected by TSC. The TSA reaches only around 1,600 people living with the condition and their families at present, and our new support service will help to change this.

In January 2020 the TSA will launch a new support service. This will include:

  • Contact via telephone (free to call), email, web chat and post
  • TSA advisers who are available 9am – 5pm, Monday – Friday, every week
  • A Support and Information Services team fully trained and knowledgeable on the impact of living with TSC across all UK nations
  • A small, dedicated and home-based team that serves only the TSC community

From 2020, the TSA’s support services will be:

  • Easier to access, with longer opening times and availability
  • Fairer to the entire community, with the same service available regardless of geographical location
  • Built for the future, allowing the TSA to offer meaningful support for many years.