A discussion about the health care of adults living with TSC

“A discussion about the health care of adults living with TSC”

Wednesday 14 September 2022, 7pm

We know that the often fragmented nature of health care for adults living with TSC continues to be an issue for many of you in our TSC Community.  We hear your frustrations at having to co-ordinate so many hospital appointments, at the lack of communication and the complexities of the health system. It’s not an issue that can be 'fixed' overnight, but it is a discussion we can start to have.

In this session Dr Zebunnessa Rahman (neurologist and epileptologist, Westmead Hospital, Sydney) and Dr Matt Sypek (nephrologist, Royal Melbourne Hospital and Royal Children's Hospital, Melbourne) will present a summary of the management and surveillance needed by adults living with TSC and talk to some of the issues in caring for adults living with TSC from a health system perspective. We will then have an open discussion about the care that exists and how it might be improved. 

This is a must-attend event for adults living with TSC and all parents and carers of adult-aged children living with TSC. This free zoom event will bring together members of our TSC Community and TSC health professionals working with adults.

Expected run time: 80-90 minutes.