With an impressive line-up of national and international
experts attending the APNETs conference, we were keen to create an opportunity
for our patients and carers to hear an update on the latest developments in the
management of NETs worldwide. We were delighted to have 155 attendees register
for our patient symposium on Sunday 11 November.
After a brief update from our CEO Simone Leyden regarding
all things Unicorn Foundation, our afternoon kicked off with an interactive
expert panel discussion, featuring Dr Simona Glasberg, Prof James Yao, Prof
Halfdan Sorbye, Dr Ben Lawrence, Prof Dermot O’Toole, A/Prof Michael Michael,
and Dr Grace Kong, moderated by Prof Rod Hicks. Our experts discussed many hot
topics, including NET genomics, clinical trials, management of high grade NETs,
symptom management, and the role and nature of multidisciplinary care. Many
questions were asked by audience members, and it was great to hear such
detailed and thoughtful responses from our panel members.
After a short break, we were then treated to some important
research updates from projects closer to home, including from NET Specialist
Dietitian Erin Laing, who gave some fascinating insights into the early data
arising from her PhD study into nutrition and NETs, and Lisa Guccione, who
discussed her research into the unmet needs of people with functional, vs
non-functional NETs. We also had a chance to view the new Unicorn Foundation
patient App and hear from Meredith Cummins how this will enhance and work in
with the PLANET Registry, a national collaboration which will allow much richer
data to be collected and compared across Australia. NET Nurse Kate Wakelin then
introduced us to the new NET Treatment and Wellness Plan pilot, which will be
coming to a support group near you soon!
Our afternoon together just flew past, in a flurry of
information, as well as a chance to connect with others. We are so grateful to
our wonderful clinicians, who donated their precious Sunday afternoon, after a
very full few days of conferences, as well as to our patients, many of whom
travelled great distances to be there. We are happy to say that this event was
filmed, and we will post a link to this on our website in the near future.