People with Marfan syndrome, aortopathy and related conditions have the chance to hear about medical learnings and advancements from experts in the field at a patient-centred conference at The Prince Charles Hospital in April.
The Marfan and Aortopathy Conference is a one-day event supported by The Prince Charles Hospital Foundation’s initiative, The Common Good, in association with the Marfan Association Queensland.
This event aims to inform people living with these conditions about the latest updates in research, pain management, physiotherapy and genetic counselling – with break-out sessions from specialists in these areas.
Below, you will find more information about the conference and the experts sharing their knowledge on the day.
Marfan and Aortopathy Conference Details
Date: Saturday, April, 20
Time: 8:00 – 4.30 pm
Place: MOBA Room within The Prince Charles Hospital’s Education Centre, Chermside
Tickets: $50 per person (this price includes morning tea, lunch and afternoon tea).
Proceeds from this year’s event will be directed towards medical research through The Prince Charles Hospital Foundation.
An Important Gathering for those with Marfan Syndrome
This year’s conference is facilitated by Dr Yong Shen Wee, a cardiologist at The Prince Charles Hospital, who specialises in aortopathy, including Marfan syndrome and related disorders.
Dr Wee will be joined by a range of esteemed professionals who have been handpicked to share their up-to-date and unique insights and knowledge.
“The Prince Charles Hospital has a dedicated Marfan Clinic that was first established by Professor Malcolm West and Mrs Jenny West. It was the first clinic in Australia to have specialists unite to provide multi-disciplinary inputs to the diagnosis and management of Marfan syndrome and related disorders,” Dr Wee said.
“However, there has been no conference in Australia/New Zealand dedicated to Marfan syndrome and aortopathy patients and families. I am keen to organise a biennial event with the support of The Prince Charles Hospital Foundation to provide education and support to patients and families.”
“Therefore, we have decided to invite all the medical professionals involved in the care of Marfan syndrome and aortopathy to provide valuable education and share their experiences in managing these complex conditions. It is also a great opportunity for the Marfan syndrome and related disorder patients, families and clinicians to meet up.”
Marfan Association Queensland president Natalie Fox will also be in attendance and, as the first person in her family to be born with Marfan syndrome, she says events like this are invaluable.
“Having a spontaneous mutation, I had no one in my family I felt could understand personally, which was challenging although they were very supportive. When I was diagnosed at 22, I felt incredibly overwhelmed, and I didn’t know what to do or where to go for support. Fortunately, I came across Marfan Association Queensland and was able to meet like-minded people who were supportive, helpful and a safe place to share our journeys,” Natalie said.
Speakers attending the conference so far include:
- Dr Kylie Burns, Cardiologist:
Dr Burns is a Consultant Cardiologist who focuses on congenital heart disease and obstetric cardiology.
Drawing on this expertise, her session will concentrate on Marfan syndrome and pregnancy.
- Dr Christopher Whight, Cardiologist:
Dr Wright is a distinguished Paediatric Cardiologist and Fellow of the Royal Australian College of Physicians.
During his session, Dr Wright will offer invaluable insights into the advancements within Paediatric Cardiology and personalised treatment methods.
- Dr Alison Rutstein, Genetic Counsellor:
Dr Rutstein spent two years as a prenatal genetic counsellor before joining The Prince Charles Hospital’s Marfan diagnostic clinic.
She will provide the latest insights about the role genetic counselling plays during testing and diagnosis.
Marfan and Aortopathy Conference Brisbane 2024
We answer a range of Frequently Asked Questions on the Marfan and Aortopathy Conference Brisbane 2024 event page here, but if you have further queries, please contact The Prince Charles Hospital Foundation on 1800 501 269.