Australian & New Zealand Fontan Registry

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Australian & New Zealand Fontan Registry

The Australian and New Zealand Fontan Registry page provides a community for children, youn Welcome to the Fontan Registry!

As a participant, parent or friend of the Registry, we invite you to join this community to share information and collaborate with other members. This page has been created by the Registry to build a forum where doctors and patients can ask questions, share their experiences and even guide future research. The Fontan Registry is the largest Fontan database in the world, providing the community with information to help improve the long-term health of patients and explore different treatment options. Despite being around for 40 years, there are still many things we do not know about the future of the Fontan procedure. By helping us ask important questions through research projects, you can be involved in providing the whole Fontan community with a better future.

28/11/2025

Miss out on this years 12th Annual Fontan Education Day? Recordings are NOW AVAILABLE to watch when it is convenient for you! Jump onto our website https://www.fontanregistry.com/ or you can pop by our YouTube channel by clicking the link
https://youtube.com/?si=pPIPxZ9Z2SXygPCN

Don't forget to please 'Have Your Say' and give us your honest feedback so we can make the day even better next year!
Please click the link to share your experience..
https://docs.google.com/forms/d/e/1FAIpQLSdzbo-ZRWCD5Cnknwk5HV32i3KuNQpsuFMawc32_3OGh3AHVQ/viewform?usp=sharing&ouid=100111357067032379643

18/11/2025

Have your say – can you help with a Congenital Heart Disease study? If you are a person living with Congenital Heart Disease or a parent, guardian or caregiver of someone with Congenital Heart Disease, you may be eligible to participate in an online focus group.
Please register your details via the link below:
https://redcap.sydney.edu.au/surveys/?s=XLKCN379T77WJ9JJ

13/11/2025

We would love to hear from you! After this year's 12th Annual Fontan Education Day, we want to thank everyone who attended and we hope you enjoyed it as much as we did. We would love to receive your feedback, hear your thoughts and ideas so we can make the day even better next year.
Coming soon.... Keep an eye out on our website to view some recorded clips of the day.

Click the link below to share your experience.
https://docs.google.com/forms/d/e/1FAIpQLSdzbo-ZRWCD5Cnknwk5HV32i3KuNQpsuFMawc32_3OGh3AHVQ/viewform?usp=publish-editor

07/11/2025

FINAL CALL! Here it is! The 12th Annual Fontan Education Day is here. This Sunday, 09 November 2025 at 09:00AM - 15:30PM.
Who is ready to 'Learn, Share and Connect?'
Registrations are still open via the link.
We cant wait to see you there!
https://us02web.zoom.us/webinar/register/WN_vRdfS8sjRYKNCUUpoZOQTQ

31/10/2025

ANNOUCEMENT! The 12th Annual Fontan Education Day is fast approaching, all happening on Sunday, 9 November | 9:00 AM – 3:30 PM.
We’re excited to announce that, thanks to the support of HeartKids there will be IN-PERSON HUBS for this year’s Fontan Education Day at Westmead (NSW) and Garran (ACT).
These hubs are a wonderful opportunity for people living with a Fontan circulation and their families to come together, connect, and share the day in person.

(Please note: Due to venue availability, there will not be a Melbourne hub this year).

For more details and to register, visit https://us02web.zoom.us/webinar/register/WN_vRdfS8sjRYKNCUUpoZOQTQ

28/10/2025

INTRODUCING Meghan Didier! Meg Didier is a health systems strategist who bridges lived experience and system design. Born with Hypoplastic Left Heart Syndrome, she has turned her personal journey into a decade of work advancing patient and family engagement in research, clinical trials, and organizational strategy.

She has led globally recognized programs that empower the voice of patients and caregivers in the liver and cardiac communities. Meg serves on the Boards of Global ARCH and Sisters by Heart, and co-chairs Community Building and Engagement with the Single Ventricle Outcomes Network. She also leads Patient Bridge Solutions, a consulting firm helping organizations build meaningful engagement strategies.

Meg will be sharing her lived experience and journey at the upcoming 12th Annual Fontan Education Day on 09 November 2025.
Please click the link to register..
https://us02web.zoom.us/webinar/register/WN_vRdfS8sjRYKNCUUpoZOQTQ

22/10/2025

REMINDER! Registrations are now open for the 12th Annual Fontan Education day on 09 November 2025. You're not going to want to miss it.. Sessions will be recorded for viewing when it's convenient.
Click the link below to register.
https://us02web.zoom.us/webinar/register/WN_vRdfS8sjRYKNCUUpoZOQTQ

17/10/2025

Are you ready for it?! Mark it in your calendars!! The 12th Annual Fontan Education Day is happening 09 November 2025, 09:00am-15:30pm.
Check out the provisional program discussing important topics about the healthcare journey as well as the lived experience.
Registrations are currently open via clicking the link.
We cant wait to see you there!
https://url.au.m.mimecastprotect.com/s/z4KQCGv0vpco6QnvCKfZuB6U2F?domain=us02web.zoom.us

09/10/2025

Hey there, we need you! Have you had the Fontan Operation?
We are currently recruiting ADULT participants and based in Sydney, Perth and Melbourne to get onboard the Congenital Heart Fitness Intervention Trial (CH-FIT). If you are interested in finding out more including eligibility criteria, please connect at
fmh.ch-fit@sydney.edu.au

03/10/2025

The 12th Annual Fontan Education Day proudly presented by the Australian & New Zealand Fontan Registry, in collaboration with the ANZ Fontan Community and HeartKids, is a unique opportunity for attendees to hear and learn from specialists in paediatric and adult cardiology and from people living with a Fontan circulation. Important topics about the health care journey will be explored, as well as the lived experience.
Please click on the following link
https://us02web.zoom.us/webinar/register/WN_vRdfS8sjRYKNCUUpoZOQTQ
After registering, you will receive a confirmation email containing information about joining the webinar.
Keep an eye on our page for more details of the program and guest speakers.
We can't wait to see you there!

01/10/2025

GET READY, GET SET.......
The 12th Annual Fontan Education Day is coming! We are busy finalising the well anticipated schedule for the day and we can't wait to share it with you!
Registrations open this Friday 3 October 2025 at 5pm AEST!

25/09/2025

This coming Monday, 29 September 2025 marks the 25th anniversary of World Heart Day! Every year on this day, we celebrate World Heart Day and it reminds us of the importance of having a balanced lifestyle to reduce risks and promote heart health. Together, let's raise awareness and 'Dont miss a beat' in encouraging heart health!

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http://www.fontanregistry.com/

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Our Story: The Fontan Registry Australia and New Zealand

Welcome to the Fontan Registry! As a participant, parent, partner or friend of the Registry, we invite you to join this community to share information and collaborate with other members. This page has been created by the Registry to build a forum where doctors and patients can ask questions, share their experiences and even guide future research. The Fontan Registry is the largest Fontan database in the world, providing the community with information to help improve the long-term health of patients and explore different treatment options. Despite being around for 40 years, there are still many things we do not know about the future of the Fontan procedure. By helping us ask important questions through research projects, you can be involved in providing the whole Fontan community with a better future.

Please, don’t hesitate to share your journey, update your participant details, get involved in research, help us to raise awareness or simply get in touch if you would like to ask us a question. You can contact the Fontan registry via info@fontanregistry.com

Yves d’Udekem and Fontan Registry Team