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Community groups and other TSC groups

Groups other than the Tuberous Sclerosis Association focused on improving the lives of people affected by Tuberous Sclerosis Complex

The Tuberous Sclerosis Association (TSA) is the only UK charity focused on improving the lives of people affected by Tuberous Sclerosis Complex (TSC).

However, there exists a number of other groups in the UK and beyond that bring together the TSC community for support and friendship.

Here, we have listed some of the most prominent groups and pages that the TSC community in the UK might be interested in connecting with.

‘Tuberous Sclerosis Outlook Group’ Facebook page

The Outlook group is a close-knit and very friendly group of adults mildly affected by TSC. They get together every year at the TSA’s flagship Outlook events, with the Facebook group helping to keep every in touch for the rest of year. New members are always warmly received and very welcome!

Click here to visit the Outlook group Facebook page.

‘Tuberous Sclerosis Mums & Dads UK’ Facebook page

A community of over 400 parents of children living with TSC in the UK. TSC Mums & Dads UK is a mutual support group, set up by TSC Parents, for UK parents who have children and adults living with TSC.

Click here to visit the Tuberous Sclerosis Mums & Dads UK Facebook page.

‘Tuberous Sclerosis Complex (TSC) Worldwide’ Facebook page

A worldwide group that brings together everyone in the TSC community. With almost 4,000 members, TSC Worldwide aims to unite the TSC community worldwide, crossing borders and cultures.

Click here to visit the Tuberous Sclerosis Complex (TSC) Worldwide Facebook page.

Tuberous Sclerosis Alliance Facebook discussion group

Tuberous Sclerosis Alliance is a TSC charity in the United States. Their Facebook discussion group hosts an active and warm community of TSC community members worldwide, with over 9,000 page followers.

Click here to visit the Tuberous Sclerosis Alliance Facebook discussion group.

We are always on the look to share more groups and organisations dedicated to supporting the TSC community. If you would like your group added, email comms@tuberous-sclerosis.org.

Would you like to have your group added to this list?
Contact us via comms@tuberous-sclerosis.org.

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.