New to CHARGE
Welcome!
If you’re new to CHARGE syndrome, you probably have many questions. Our volunteer team of parents and professionals is here whenever you’re ready—to listen, share, and support in any way we can.
Beyond the medical information, we want you to know that children with CHARGE syndrome are often remarkably brave, clever, and strong. They will make you laugh, surprise you, and bring immense joy to your life.
If you’d like to connect with another parent in your region, just send us a quick email and we’ll make the introduction.
Request a welcome pack
We have created a gift pack to welcome new families into the CHARGE syndrome community and to let them know they are not alone. Don’t be shy and contact us to request a gift pack.
If you know someone (in Australasia) who has just received their CHARGE Syndrome diagnosis, let us know and we will send them a pack.
CHARGE Syndrome Check-List
A comprehensive approach to health screening and management for individuals with CHARGE syndrome is essential. We developed a checklist organized by body system and age to guide the healthcare provider in their approach to care. The checklist was evaluated using a modified Delphi method to develop a final consensus.
Take this to your paediatrician in the first instance, as they are unlikely to know about all the considerations for a child with CHARGE Syndrome.
By Dr Kim Blake
Read this first
Financial support
A new CHARGE syndrome diagnosis can feel overwhelming - managing medical appointments, starting therapies, and daily care while trying to understand the NDIS and other Government supports. It’s a lot to take in.
Here is some basic information to get you started.