Who We Are and What We Do

TSA (Tuberous Sclerosis Australia) is the only charity in Australia supporting people with TSC (Tuberous Sclerosis Complex). TSA is dedicated to creating a better life and more hopeful future for everyone in Australia affected by TSC by providing knowledge, support and connection. 

We directly support people affected by TSC and create a Community of people facing similar challenges who can support and learn from one another. We also provide people living with TSC with connections to expert health care professionals and relevant services.

We work closely with our Medical Advisory Panel and other health care professionals and researchers in Australia and around the world to discover new treatment and screening options and search for a cure. We believe in the power of community and that we are stronger together.

We raise awareness of TSC and advocate on issues such as access to health care and new treatments. Our voice is amplified by working with peak bodies such as TSC International (of which we are a founding member) and Rare Voices Australia. We also have a close collaboration with Tuberous Sclerosis Complex New Zealand (TSCNZ). 

A trusted expert, we are the go-to resource for information, advice and support for anyone in Australia affected by TSC. 

About us

Who We Are and What We Do
What We’re Working On
TSA’s Strategic Plan 2023-2025
Our Team
TSA’s Management Committee
Our Medical Advisory Panel
Our Achievements
Impact/Annual Reports
Contact Us

Our Purpose 

Our purpose is to help create a better life and more hopeful future for everyone affected by TSC. We do this by providing knowledge, support and connection. We remain committed to do everything we can to make life better for people affected by TSC.

Our Beliefs

• We believe in the power of community and that we are stronger together.

• We respect the uniqueness of every person and their experiences.

• We believe knowledge is power.

• We will never be done fighting the fight until there is a cure for TSC.

TSA Over 40 Logo CMYK 1 1

How we Deliver on our Purpose

1. Through information and education:

We provide accurate, balanced information about TSC, best practice management and surveillance, latest research and treatment options.

2. By empowering people in the TSC Community:

We enable people living with TSC to pro-actively manage their health and wellbeing by providing both emotional and practical support and advice.

3. By providing essential and valuable connections:

We connect people living with TSC to expert health care professionals and relevant services and to other people facing similar challenges.

4. Through advocacy:

We raise awareness of TSC and advocate on issues such as access to health care and new treatments.

More about TSA

How we are funded

We receive no government funding. Our ongoing success relies on your donations, membership, fundraising and corporate support. TSA’s ability to provide free services and support is thanks to the generosity of the TSC Community who are critical in inspiring family and friends to donate. Any support, big or small, can help change lives for people living with TSC. To find out more about how you can support TSA, please click here.

Our history

TSA was formed in 1981 as the Australasian Tuberous Sclerosis Society (ATSS). The organisation was established by volunteers from the TSC Community. To this day people with a personal connection to TSC remain closely involved. We acknowledge and thank our previous leaders particularly Lynn Wilson, Sue Pinkerton and Clare Stuart.