TANDem2 and the TAND Toolkit App

TSC-associated neuropsychiatric disorders (TAND) affect more than 90% of people living with TSC (Tuberous Sclerosis Complex). TAND includes a wide range of challenges with behaviour, learning, attention, mental health, sleep, emotions and daily functioning. Despite their significant impact on quality of life, TAND symptoms all too often remain under-recognised and undertreated.

The TAND Toolkit App, which is part of the new TANDem2 research study, helps you track your or your loved one’s TSC-related neuropsychiatric challenges and offers practical strategies you can try at home. It is one of the most significant developments in TSC this decade. Find out more now!

Watch the webinar

In this short webinar members of the international TANDem team talk about the TANDem2 research study and show you the TAND Toolkit App in action.

Find out how you can use it to track your or your loved one's TSC TAND over time.

Watch now

TANDem2

The international TANDem-2 study aims to:

Improve understanding of how TAND changes over time
Identify factors that influence these changes
Explore whether supporting caregiver wellbeing can also improve outcomes for people with TSC.

Read the research

Join us in advocating for change

Australia’s current Health Technology Assessment (HTA) system is not fit for purpose when evaluating new therapies for rare diseases like TSC. Rare Voices Australia has launched an advocacy campaign, supported by TSA, demanding changes to the HTA system. If you would like to lend your support, find out how you can join the campaign on our website.

Lend your support

Help shape the new NDIS Support Needs Assessment

The NDIS is introducing a new Support Needs Assessment. It will help decide a participant’s funding and supports.

People living with rare disease disability such as TSC can take part in paid testing to help to make sure the assessment works for complex, multi-system conditions and people with high or changing support needs.

Find out more

TSA's AGM 2026

TSA's Annual General Meeting 2026 will be held via Zoom at 8pm AEDT on Wednesday 28 October. All members are invited to join us. Please just send an email to [email protected] to be sent a link to join the meeting.

We look forward to seeing you there.

TSA is here for you

If you or a loved one need information or support about any aspect of living with TSC please connect with Katrina, the TSA Nurse. This is a free and confidential service.

Call 1300 733 435 (Australia only)

Email [email protected]

You can also find the latest TSC information at tsa.org.au

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