In October 2014 TSC expert clinicians from around Australia met in Melbourne to discuss management of TSC and collaborate on projects that will improve care for people with TSC.
Tuberous Sclerosis Australia was represented by Debbie Crosby (President) and Clare Stuart (General Manager) who spoke to professionals about TSAs work and offered the patient and family perspective in discussions. The meeting was fully funded by Novartis, including Debbie and Clare’s travel to Melbourne for the day. You can read more about TSA’s policy on working with the pharmaceutical industry on this page.
The meeting agenda was put together by a dedicated team of professionals who continue to lead their colleagues in the care of people with TSC. This steering committee ensured that the focus of the meeting was on the best outcomes for the Australian’s living with TSC and their families.
Thank you to the steering committee for making this meeting a success:
- Dr Sean Kennedy, Sydney Children’s Hospital – Paed Nephrologist (Chair)
- Dr John Lawson, Sydney Children’s Hospital – Paed Neurologist
- A/Prof Nikky Isbel, Princess Alexandra Hospital – Nephrologist
- Dr Simon Wood, Princess Alexandra Hospital – Transplant urologist
- A/Prof Deborah Yates, St Vincent’s Hospital – Thoracic physician
- Dr David Mowat, Sydney Children’s Hospital – Clinical geneticist
While there was a large amount of discussion about mTOR inhibitor medicines, there was also significant discussion about the genetics of TSC, improving care coordination and management of epilepsy.
You can read more about mTOR inhibitor medicines on this page.
There is a full report from this meeting available from Research Review. You can download this here: Speaker Series – Tuberous Sclerosis Complex Meeting Summary
This report has been written for an audience of professionals. If individuals with TSC or their family members have any questions after reading this report we encourage you to contact us for more information or to speak to your health professional(s). This report does not constitute medical advice.
While at the meeting, Debbie and Clare recruited several professionals to join the TSC Professionals Directory. TSA uses this list to connect individuals with TSC to professionals in their area who have made a commitment to stay up to date on TSC diagnosis and management.