Welcome to our August eNewsletter. In this bumper issue:

• Register to hear about the new TAND Toolkit App from the international team who developed it
• Lend your voice to help us get Epidyolex listed on the PBS
• Test the new NDIS Support Needs Assessment

Jackie, CEO, TSA 

The international TANDem team will be hosting a Zoom on the new TAND Toolkit App especially for our TSC Community in Australia at 8pm AEST on Monday 31 August. 

The TAND Toolkit App, which helps you track your or your loved one’s TSC-related neuropsychiatric challenges is one of the most significant developments in TSC this decade.

Don't miss this opportunity to find out about this new tool and get your questions answered by the experts. 

We want Epidyolex® (cannabidiol) approved for the treatment of seizures associated with TSC. The Pharmaceutical Benefits Advisory Committee (PBAC) will consider this at its November meeting. Public input is an important part of the PBAC decision-making process.

Please click HERE to complete a short survey and show your support.

The closing date is 16 September 2026.

This new research study explores how kidney AMLs are managed in real-world clinical practice and the impact that mTOR inhibitor medications can have on reducing complications over time. It highlights the need to advocate for both early screening and intervention. 

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.

Being a sibling of someone living with disability is a journey filled with change, love, challenges and growth. 
LifeChanges is a free four-part online webinar series from Siblings Australia, designed to help adult siblings build knowledge, skills and confidence while strengthening their relationship with their brother or sister with disability.