On Saturday 15 March a workshop was organised by MSD for clinicians “Advances in VHL: Multidisciplinary Forum”.
Dr Minmin Li was the facilitator for the event which had over 30 specialists and nurses from all over Australia attend. Dr Li opened with a presentation “Understanding VHL” which gave comprehensive information to the attendees. Lana, a VHL patients then told her story which really touched everyone with her honesty and candour of the impact of VHL – the troll of a disease which has affected her and her father. Dr Simon Wood (Urologist) spoke about the current management of VHL – Renal Cell Carcinoma. Then Dr Erica Jacobson (Neurosurgeon) presented current management of VHL – CNS Haemangioblastomas. Dr Othon Iliopoulos (Oncologist in Boston) joined the event virtually and spoke about HIF-2a Inhibitors: Examining the Clinical Data for VHL- Associated tumours.
There we several panel discussions and case studies during the day which included on the panels A/Prof Kathy Tucker, Dr Cathy Kiraly-Borri (Clinical Geneticist), Dr Wood, Dr Jacobson and Meredith Cummins (NECA CEO). In the afternoon there was a Fireside Chat : Navigating VHL disease, a caregivers journey with Pat & Nicky parents of Levi (VHL patient) and interviewing done by Meredith Cummins. To finish the afternoon attendees went into breakout groups, which were extremely interactive to brainstorm the goals of VHL care in each state and how could this be achieved – each group were asked to have a Wishlist – there were general consensus that there needs to be nurse coordinators in each state, development of VHL Optimal Care Pathway nationally, a resource library housed on NECA’s website for information accessible by HCPs and also patients / families – the final wish was to have a national case discussion so care could be truly multidisciplinary and improved outcomes for patients.
