Tuberous Sclerosis Australia aims to provide up to date information and quality support services to improve the lives of individuals with TSC and their families.
Essential information
- If you, or your child, are newly diagnosed – our New Diagnosis Page is a good place to start
- Read the clinical guidelines for the management of tuberous sclerosis. These provide a checklist of the various tests recommended for a person with TSC.
- Contact the TSA Nurse. The TSA Nurse Service is a confidential service where you can speak to our qualified nurse about anything to do with tuberous sclerosis complex (TSC).
Learn more
- Read our medical information pages – For symptoms, surveillance and treatment information about the different systems affected by TSC, genetics and information about mTOR inhibitor medicines for TSC (Sirolimus and Everolimus).
- Explore our resources – an ever growing list of helpful resources for everyone affected by TSC.
- Read stories from other families living with TSC – you are not alone and these stories reflect the large spectrum of TSC experiences.
- Read the latest news and subscribe to our email newsletter – to keep up to date with TSC research news, Tuberous Sclerosis Australia’s activities and upcoming events in your area.
- Read our In Safe Hands guides for families and teachers of children at school.
Connect with others
- Join our facebook discussion group – a closed moderated group to share triumphs and frustrations and ask questions of others affected by TSC.
- Find out about upcoming events – although attending your first event can be very daunting, many find it is a way to ease feelings of isolation and make connections with a community that knows the challenges of living with TSC and can provide practical advice and emotional support.
Get involved
- Join Tuberous Sclerosis Australia – We receive no ongoing government funding and joining as a member is a great way to support our work. You will also receive printed copies of our twice-yearly magazine, Reach Out.
- Fundraise for TSC research or support– fundraising efforts small and large make a big difference to our small organisation and also raise awareness of TSC in the community.