PATIENTS & FAMILIES

Patient & Family Focused

Patients and families are at the heart of our work. FON is designed by patients, families, clinicians, and scientists working together toward a vision focused on transforming outcomes and quality of life for all people affected by single ventricle heart disease and Fontan circulation.

How Can I Get Involved?

The first step in involvement is understanding what we do. Click one of the following links for a pediatric or adult version of our FON one-pager. This resource outlines what the Fontan Outcomes Network is, why our network is needed, and how we work. You will also find our five ways to engage with the network, which give concrete steps you can take to get involved with our network.

Please note that Spanish language versions of these one-pagers are currently in process. They will be shared on this page soon!

Is Your care center a part of FON?

Are you or your family member an individual with single ventricle congenital heart disease (SVCHD) living with a Fontan circulation? Your or your loved one’s hospital may be a FON care center. Click here to learn more about FON’s current care centers.

Don't see your or your loved one’s care center on our list?  Ask how you and your care team can get involved at your next clinic visit. 

Single Ventricle Patient Day

Since 2019, FON has worked with NPC-QIC to host this event each fall. This session is designed for patients by patients with the intent to connect and empower teens and adults with single ventricle circulation so they feel supported and uplifted, while gaining the tools to take control of their CHD care. For more information, visit the Single Ventricle Patient Day Facebook page or email info@fontanoutcomesnetwork.org.