New genetic information for families

We have updated existing content and added new Genetic Information resources for families here. The resources aim to help families better understand this complicated area. Topics covered include genetic terms; genetic epilepsy; genetic inheritance; genetic testing; what to expect at a genetic appointment; and genetic links and resources. 

February 20, 2023

Updated Genetic Information for Clinicians

We have updated the Genetic information resources for Clinicians here.  Topics covered include: Why Genetic testing; Diagnostic Yield; Chromosomal Microarray; Fragile X PCR; First-line Metabolic testing; Exome/Panel; and When to refer to genetics.  

February 20, 2023

Finding A Way video series

We have created a new video series called Finding A Way. You can access the resource here.

The resource includes six brief positive psychology videos designed for parents of children with severe epilepsy that persists over a long time. They may be of help for any parent who has a seriously ill child. However, they were specially prepared with parents of young children with very serious brain disorders in mind.

March 30, 2022

New Genetic Information for Families

We have created new Genetic information resources for families here. The resources aim to help families better understand this complicated area. Topics covered include: genetic epilepsy; genetic inheritance; genetic testing; what to expect at a genetic appointment; and genetic links and resources. 

May 18, 2020

New Genetic Information for Clinicians

We have created new Genetic information resources for Clinicians here.  Topics covered include: Why Genetic testing; Diagnostic Yield; Chromosomal Microarray; Fragile X PCR; First-line Metabolic testing; Exome/Panel; and When to refer to genetics.  

May 18, 2020

Makayla's Story

At just five years of age Makayla suddenly suffered a fit that lasted 54 minutes. She was rushed to hospital by ambulance. She was in the Sydney Children's Hospital, Randwick, for one week and underwent tests that monitored her brain activity to understand the severity of her condition.
February 1, 2019