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Contact our support team

We are here for everyone in the Tuberous Sclerosis Complex community

The TSA is here for everyone affected by TSC. This includes people living with the condition, their families, loved ones and friends, and the health, social care and education professionals who support them.

At every stage of your Tuberous Sclerosis Complex (TSC journey), we can offer you support and information on a wide range of TSC-related subjects.

You can talk to the TSA’s small team of friendly and professional advisers about any TSC-related topic, such as taking your first steps following a recent diagnosis, accessing emotional support during a tough period, or securing a referral from your GP to an NHS TSC clinic.

Through the TSA’s support services team, the active TSC online community and flagship TSA annual events, you should never feel alone with TSC.

The TSA is piloting a new free and confidential support line – from this day, you can contact our small team of friendly and professional advisers by:

  • Telephone: 0808 801 0700
  • Email: support@tuberous-sclerosis.org
  • Post: TSA, Unit 56, 1 Emma Street, London E2 9FP (or send to ‘Freepost TSA’)

Web chat support is planned for later in 2020, following the launch of the final support line.

How quickly can I get help?

  • If you get in touch by phone – You can expect to speak to someone on the day that you call
  • If you get in touch by email – You can expect a reply within a maximum of three working days
  • If you get in touch by post – You can expect a reply within a maximum of three working days of us receiving your letter

A translation service for over 200 languages is being put in place for the support line through an external provider, allowing us to support those for who English is not their first language. This service will be in place by the time the service formally launches in April 2020.

How our support services are changing in 2020

The TSA is piloting a new support line. Although this means transitioning away from our previous regional advisor set-up, the new support line allows the TSA to deliver sustainable, consistent and high-quality support to the growing TSC community for years to come.

The pilot has been shaped by feedback, concerns and ideas from the TSC community that we have received during TSA events, online surveys and telephone focus groups.

During the pilot period we will proactively seek feedback from service users, ahead of a formal launch for the new support line which is expected in April 2020.

What can I expect from the new support line pilot?

The new support line pilot will include:

  • Contact via telephone (free to call), email, and post. Web chat will follow later in 2020
  • Friendly, professional TSA advisers who are available 9am – 5pm, Monday to Friday
  • A small, dedicated and home-based team that serves only the TSA community
  • Signposting to specialist and local services when additional expert support is needed
  • A team who are trained and knowledgeable about the impact of living with TSC across all four UK nations

Following the pilot, we expect to formally launch the support line in April 2020.

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 (see links below).

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.