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Contact our support team

The TSA is here for everyone in the TSC community, including people living with the condition, family members/loved ones and professionals.

At whatever stage you are in your own unique Tuberous Sclerosis Complex (TSC) journey, we can offer you support on a wide range of TSC-related subjects.

The Tuberous Sclerosis Association (TSA) helps support people all around the UK who are affected by TSC.

A source to ask questions and confide, you can talk to us about any TSC-related topic including first steps following a recent diagnosis, outreach for emotional support or help with filling out a benefits form.

Through our support service team, active online community and flagship annual events, you should never feel alone with a TSC diagnosis.

I want to talk to the TSA’s support and information team

The 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.

Between now and 2020, anyone wishing to speak to a TSA advisor should contact Rachael Wyartt (Head of Information and Support) via Rachael.Wyartt@tuberous-sclerosis.org or 0300 222 5737.

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

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
Email – Rachael.Wyartt@tuberous-sclerosis.org

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

Our Support and Information Services team, including experienced advisers, remain eager to help support the community with all TSC enquiries

How our support services will change from 2020

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.

How will the TSA’s support services be different from 2020?

From 2020 onwards, anyone wishing to access the TSA’s support services will be able to do so through a free and confidential central support service, including a support line that will be open 9am – 5pm Monday – Friday.

Although this means transitioning away from our current regional adviser setup, the new support service allows the TSA to deliver sustainable, consistent and high-quality support to the ever-growing TSC community for many years to come.

The TSA wants to help everyone understand what to expect from our future support services.

To be as open and transparent as possible, we have provided an overview of what our community can expect once the new central support service is live, available here.

Help and support with legal issues

The TSA’s support team is not able to offer advice or information on legal issues. However, there is help available from a range of sources about legislation, lasting power of attorney and legal welfare.

The Office of Public Guardian provides information and the sources on a range of legal issues, including lasting power of attorney.

The Court of Protection makes decisions on financial or welfare matters for people who can’t make decisions at the time they need to be made.

Charities and other voluntary organisations, such as Disability Rights UK and Cerebra, also offer guides and advice on legal issues

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.