As the only charitable organisation for tuberous sclerosis complex (TSC) in Australia, Tuberous Sclerosis Australia (TSA) undertakes a wide variety of activities to benefit the individuals living with TSC and their families in Australia. These include education, support services, advocacy and research.

Formed in 1981 as the Australasian Tuberous Sclerosis Society (ATSS), our members include hundreds of families, in addition to professionals from the medical, caring and education fields. We are a founding member association of Tuberous Sclerosis Complex International (TSCi) and work closely with Tuberous Sclerosis Complex New Zealand.

Our vision 

Our vision is that:  “Together, we can create a better life and more hopeful future for every individual living with TSC”. 

To achieve this, we focus our activity on connecting and supporting those affected by TSC throughout Australia and providing up to date information on TSC  treatment and management. When families and individuals have access to current information and have a strong support network, they are empowered to strive for the best outcomes.

Our work includes

Education and Connect Events

TSC conferences, seminars and workshops are held around Australia.  In 2007, 2011 and  2015, joint TSC medical and family events helped TSC health professionals to share the latest research and connect with other TSC specialists. The next major medical and family event is planned for 2020.

Travel subsidies are sometimes available to encourage TSC families from interstate to attend.

Each May for TSC Global Awareness Day, our regional contacts and community members host  events around Australia.

Expert Information and Support 

This website contains medically reviewed information pages and a rich set of resources and articles about TSC. It is regularly reviewed and updated to ensure the information is both current and accurate.

We publish a magazine, Reach Out twice a year which includes personal stories and monthly enewsletters which feature the latest research into TSC and other information on the many aspects of life with TSC.

To help connect those affected by TSC and raise awareness of this condition, TSA is also on Twitter and Instagram, and has a Facebook page and facilitates a closed Facebook discussion group for those affected by TSC in Australia and New Zealand.

TSA also provides TSC information to medical and health care professionals.

TSA Nurse Service

TSA has a part-time nurse (Kim) who can help with any questions and/or concerns about tuberous sclerosis complex (TSC).  This is a free, confidential information and support service which provides TSC information and links to practical support.  Those affected by TSC can book a time to talk with Kim by completing the booking form on this website or by emailing [email protected]

Health Professionals Directory

TSA maintains the TSC Professionals Directory, a listing of health professionals who have made a commitment to stay up to date with best practice in the diagnosis, surveillance and management of TSC.

Advocacy

TSA advocates on behalf of those affected by TSC on issues such as access to new treatment, co-ordinated health care and support services. We collaborate with larger organisations including the Consumers Health Forum to achieve these outcomes.

The Lizzie Pinkerton Memorial Award

This award encourages and rewards exceptional work by a professional to improve the lives of families living with TSC in Australia and New Zealand. This award was established in 2011 and is announced at the annual general meeting each year.

TSA’s Achievements

Legal information

Tuberous Sclerosis Australia Inc. is an incorporated association under New South Wales law. You can download and read our constitution here.

We are registered with the Australian Charities and Not-for-profits Commission (ACNC).

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