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ANZ Fontan Registry | Medical company



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ANZ Fontan Registry

Phone: +61 3 9936 6246



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25.01.2022 A warm welcome Fiona



25.01.2022 Our colleague and Fontan Registry friend, Dr Chantal Attard has had her wonderful research highlighted by MCRI in an article detailing the importance of children who are at risk of developing thrombosis. Thank you to Chantal for her ongoing dedication and research work in the field of Haematology

24.01.2022 Motivational Monday: The Annual Fontan Education Day We are pleased to present to you the 7th Annual Australian and New Zealand Fontan Education Day Live Virtual Webinar! Once you have registered your attendance by entering your name and details, you will get a confirmation e-mail with details on how to join in on the day. Registration and event is FREE! For those who cannot attend our live sessions, we will provide a recording that will be available once the event is o...ver. Details: - We will be using GoToWebinar. - You can join our session by using a Mac, PC or a mobile device. If you have any questions about the day please e-mail: [email protected] Education Day Program: Saturday 19th September (9:30am) Welcome and update on ANZ Fontan registry and CSANZ Statement (9:40am) What is a Fontan Circulation? (10:00am) Australian and New Zealand Fontan Advocacy Committee Update and consumer research priorities Morning break (11:00am) Mental Health, Fontan and the wider family (11:20am) Neurocognitive outcome data (11:40am) Paediatric practical neuro advice (12:00pm) Adults practical neuro advice Lunch (1:30pm) Valve regurgitation new evidence and surgical reintervention (1:50pm) Evidence based medications in the Fontan setting: anti arrhythmia’s, ace-inhibitors, anti-coagulation and common/new medication (2:10pm) COVID19 & the Fontan (2:30pm) Body composition and Exercise (2:50pm) Navigating the NDIS and Fontan Afternoon break (3:40pm) LIVE Q&A panel Adults (4:00pm) LIVE Q&A panel Paediatrics (4:20pm) LIVE Q&A panel Lifestyle (4:40pm) LIVE Q&A panel Mental health and well-being for families Register below now via the link, if you haven't already:

22.01.2022 Fontan Friday On behalf of the ANZ Fontan Registry, we would like to congratulate and thank John Casamento and his family on the launch on this wonderful book, as a generous fundraiser for the ANZ Fontan Registry. Each book sold, will directly go to helping the Fontan Registry provide much needed funds to assist in the continued research and clinical trials we are able to run across Australia and New Zealand. If you a looking for a Christmas present, a coffee table book or would like to help support John’s beautiful work, then please purchase a copy of the book because it’s OFFICIALLY ON SALE NOW #FontanCommunity #Fontanfamilies #ANZFontanRegistry #Researchsaveslives



22.01.2022 Let us know how you're finding the Fontan Education Day webinar so far? We are halfway through and have had some great presentations, with more to come!!

22.01.2022 R U OK Day - "There's more to say after R U OK?" The ANZ Fontan Registry is always here and happy to lend a hand where possible, so reach out to our team if you need and we will do our best to assist you or link you in with dedicated medical professionals, specific support organisations or provide further information to you.

22.01.2022 Only 3 weeks to go! We are pleased to present to the community the 7th Annual Australian and New Zealand Fontan Education Day Live Virtual Webinar! Once you have registered your attendance by entering your name and details, you will get a confirmation e-mail with details on how to join in on the day. Registration and the event is FREE! It will be an interactive event that must not be missed! For those who cannot attend our live sessions, we will provide a recording that w...ill be available once the event is over. Details: - We will be using GoToWebinar. - You can join our session by using a Mac, PC or a mobile device. If you have any questions about the day please e-mail: [email protected] Register: https://register.gotowebinar.com/regis/8770784871225126147 Education Day Agenda: (9:30am) Welcome and update on ANZ Fontan registry and CSANZ Statement (9:40am) What is a Fontan Circulation? (10:00am) Australian and New Zealand Fontan Advocacy Committee Update and consumer research priorities Morning break (11:00am) Mental Health, Fontan and the wider family (11:20am) Neurocognitive outcome data (11:40am) Paediatric practical neuro advice (12:00pm) Adults practical neuro advice Lunch (1:30pm) Valve regurgitation new evidence and surgical reintervention (1:50pm) Evidence based medications in the Fontan setting: anti arrhythmia’s, ace-inhibitors, anti-coagulation and common/new medication (2:10pm) COVID19 & the Fontan (2:30pm) Body composition and Exercise (2:50pm) Navigating the NDIS and Fontan Afternoon break (3:40pm) LIVE Q&A panel Adults (4:00pm) LIVE Q&A panel Paediatrics (4:20pm) LIVE Q&A panel Lifestyle (4:40pm) LIVE Q&A panel Mental health and well-being for families



21.01.2022 Sincerest congratulations to our colleague and long standing Fontan Registry friend, Professor David Winlaw on being awarded one of Australia’s top researchers for 2020! Many of you may recognise Professor Winlaw from your own personal interactions, given his paediatric cardiothoratic surgical background however others may recognise him from the Annual Fontan Education Days over the years. We are thrilled to see David Winlaw recognised formally for all his hard work and out...standing publications. Well done Professor Winlaw #ANZFontanRegistry #Researchsaveslives

21.01.2022 Fontan Friday Does Fontan Friday get any cuter?! As we say farewell to our much loved Prof Yves d’Udekem this week, we wanted to share with you one of Yves biggest fans from over the past years at RCH, Mr Levi! ... A special thanks to Levi (and his Mum, Michelle) for making our Fontan Friday post an absolutely adorable one! #fontanfriday #fontancommunity #fontanfamilies

20.01.2022 Motivational Monday Professor Samuel Menahem, a senior Cardiologist at the RCH and a familiar face to many families within the Fontan community has written a reflection piece, acknowledging the valuable and enduring contribution of teachers and mentors and explaining how these people informed and influenced his own medical career.

20.01.2022 Motivational Monday It’s nice to a familiar face, Prof Yves d’Udekem our Fontan Registry founder - FYI this virtual event will be occurring on the 27th February at 11:30am AEDT & 1:30pm for NZ

19.01.2022 If you need to register for tomorrow’s FREE Annual Fontan Education day via webinar, then make sure you do! Register Here: https://register.gotowebinar.com/regis/8770784871225126147



19.01.2022 Final program for this Saturday’s 7th Annual Fontan Education webinar day! If you haven’t registered, make sure you do! If your unable to attend however would still like to access the presentations, then you also need to register to ensure you can have access via Go to Webinar after Saturday’s event. Register here: https://register.gotowebinar.com/regis/8770784871225126147

17.01.2022 Today is the day - The 7th Annual Fontan Education Day!! We are looking forward to today’s webinar event and thank those in the Fontan community who are able to join us! If your not able to join us today, however would still like access to the presentations after today’s event then please make sure you still register below via the link so you can acess these presentations at a later date. Registration link below: https://register.gotowebinar.com/regis/8770784871225126147

16.01.2022 Health warning for those in Victoria regarding thunderstorm asthma, see further info below.

15.01.2022 Motivational Monday and CHD Awareness Day Fantastic research collaboration between Haematology and Heart Research! We are proud as punch, to see our researchers recognised, especially Dr Chantal Attard and her team for their hard work and outstanding contribution to the research world #ANZFontanregistry #Fontancirculation #fontanregistry #researchsaveslives

14.01.2022 Motivational Monday Celebrating the importance of NAIDOC week - visit https://www.naidoc.org.au for more information on how to become involved in events and the celebrations. Always Was, Always Will Be. recognises that First Nations people have occupied and cared for this continent for over 65,000 years

13.01.2022 World Kindness Day

13.01.2022 Fontan Friday A fantastic collaboration project with Adult Cardiologist, Dr Luke Burchill and The Australian and New Zealand Fontan Advocacy Committee - Community

13.01.2022 Motivation Monday On behalf of the Fontan community, we continue to wish Lauren all the very best and thank her for sharing her insights into her experience of testing positive for COVID-19.

13.01.2022 Motivational Monday Do you need to update any of the following criteria for you or your child, who are registered as part of the ANZ Fontan Registry? 1) Residential address - Have you moved or need to update these? ... 2) Contact details - Have you got an updated email or phone number? Do you want to add your mobile or check these details? 3) Treating cardiologist details - Have you transferred care, changed cardiology services or have a new treating cardiologist? 4) Update your preferred method of being contacted, such as email, phone - this is essential if you would like to be apart of upcoming research studies, clinical trials or be informed about other fontan registry based correspondence. You can check or update any of the above for yourself (Fontan Registry participant) or as a parent of a child under the age of 18 via clicking the link below. https://redcap.mcri.edu.au/surveys/?s=FgnpPGcRG6 You can also email: [email protected]

11.01.2022 We love this feature in the Herald Sun today, highlighting the incredible work of John Casamento, Grandfather to Noah who is a thriving young adult apart of the ANZ Fontan Registry. If you haven’t picked up a copy of today’s Sun, then make sure you do and better yet, make sure you purchase a copy of John’s beautiful book if you haven’t already - Never work with Children or Animals. This book makes for the perfect coffee table book or special gift All proceeds raised from the book sales are being generously donated to the Fontan Registry by the Casamento family #Fontanfamilies #fontanheroes #Fontannews

11.01.2022 Throwback to five years ago! We are now a registry with close to 2000 patients, inclusive of children, young people and adults from cardiac centres and cardiologist’s from all over Australia and New Zealand. A special shout out to Hamish and his lovely family, who feature in this memorable MCRI 5 year throwback ... #ANZFontanRegistry #ANZFontanCommunity

11.01.2022 New Q&A coming soon with Hepatologist, Dr Avik Majumdar. Avik is a Staff Specialist at the Australian National Liver Transplant Unit, AW Morrow Gastroenterology... and Liver Centre, and Royal Prince Alfred Hospital. He is also a Clinical Senior Lecturer at the University of Sydney. Send your questions for Avik to Rachel: [email protected] #ANZFAC #QandAs #FontanCommunity #fontan #liver #FontanCirculation

09.01.2022 The liver is an organ that is of particular importance and requires surveillance to those within the Fontan Registry Community

09.01.2022 Happy Word Heart Day to everyone in our wonderful single ventricle Fontan Community #HappyWorldHeartDay #anzfontancommunity

09.01.2022 Fontan Friday Only 8 days until the 2020 Annual Fontan Education Day Free Online Webinar! Make sure you register below via the link, so you don't miss out!

08.01.2022 Motivational Monday Sharing this upcoming event for Adults living with a Fontan, on behalf of our friends at ANZFAC. Further details available via the event link below.

06.01.2022 On behalf of the Australian and New Zealand Fontan Registry, we would like to thank those who attended the 7th Annual Fontan Education Day webinar today. It was fantastic to have close to 200 attendee's join us from near and afar, including our international friends and colleagues. A special mention goes to all our our wonderful presenters, facilitators and panellists - everyone was suburb! If you were unable to join us, please be assured that we will be making the webinar r...ecording available to all those who were unable to make it. We will have further details for this recording in the coming weeks and will post the update on social media. Once again, thank you to each and everyone of you in the Fontan community for continuing to support these events - we can't do it without you. ANZ Fontan Registry Team

05.01.2022 Fontan Fathers Day On belhalf of the Fontan Registry, Happy Fontan Father’s Day to all Dad’s within the Fontan Community! This year we have a special shout out in our Fontan community to Matt, father of Wes who is also celebrating his 13th Birthday today ... Happy Birthday to Wes and Happy Fathers Day Matt! #fontanfamilies #FontanCommunity

03.01.2022 Fontan Friday Make sure, that if you haven't already - REGISTER for this year's annual Fontan Education Day! This year will be FREE and will be held online, via virtual webinar - everyone welcome to attend! All of your favourite clinician's, doctor's and health care expert speakers will be presenting on a wide range of topic's related to Fontan care - so make sure you register!

02.01.2022 A special Fontan Friday, dedicated to Yves upcoming farewell on behalf of the RCH and a very happy little girl - named Yve

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