Our community

CHARGE champions

Our CHARGE Champions, as well as Association members, are your connection to families in your area. They are available to share their own lived experiences and will organise local meet-ups for families. Don’t hesitate to contact a CHARGE Champion, or anyone on the Association Board, anytime.

NSW: ellen.howe@chargesyndrome.org.au

TAS: kylie.moore@chargesyndrome.org.au

VIC: belinda.arnell@chargesyndrome.org.au

New Zealand: kelsey.dalton@chargesyndrome.org.au

If you would like to be a CHARGE champion for your area, please get in touch!

Warrior welcome pack

We are creating gift packs to welcome new families into the CHARGE syndrome community and to let them know they are not alone. Learn more and see what’s in the pack.

Children with CHARGE - a film by Rob Last

Rob Last AM captured a record of eight children who had been diagnosed with CHARGE syndrome. In 1993, he filmed these eight young people and followed their progress again in 2000 and 2007.

These extraordinary people are: Anthony, Julia, Yasmin, Brianna, Talisa, Ellen, Sophia and Andrea. In 1993 he focused on their communication and gross motor development, and in 2000 and 2007 he focussed on broader issues. He captures their spark, their skills, their challenges and we hear about their hopes and dreams for the future.

All of the eight short videos are available on You Tube.

Conferences & webinars

The CHARGE Syndrome Association of Australasia organises a conference every two years. A range of topics is covered relevant for families, individuals with CHARGE syndrome, educators and for medical professionals.

The next conference location has not yet been announced. In the meantime, take a look at our past conference photo galleries.

Facebook groups

CHARGE syndrome Australia New Zealand

This is a parent-led closed facebook group, for local families, carers, people with CHARGE Syndrome, and also for those with an interest in CHARGE syndrome. The aim of the group is to provide a safe, understanding space, where members can share information and advice, learn from one another, celebrate together and support each other.

Join the CHARGE Syndrome Australia New Zealand Facebook Group

CHARGE syndrome adults 18+

This group is for adults who have CHARGE syndrome and 18+. No parents or professionals allowed (unless they have CHARGE syndrome).

Join the CHARGE Syndrome Adults 18+ Facebook group

Grandparents of individuals with CHARGE syndrome

A place where grandparents can connect and discuss concerns and issues important to them. A place to have an open discussion about their feelings, their loss, and their gains.

Join the Grandparents of individuals with CHARGE Syndrome Facebook group