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Expert guidance, real-life parent experiences

Hear from clinical experts and the personal experiences of parents as they share insights and practical advice. Whether you’re just beginning to ask questions or managing daily life for your child with a genetic condition, you’ll find guidance and support to help navigate the journey — and the comfort of knowing you’re not alone.

Explore the webinar series

Session 1: Could It Be Genetic?

For families just beginning to explore whether a child’s health or development might have a genetic cause. In this session, we hear from a senior genetic counsellor and an experienced parent to learn what signs to look for, how to talk with your doctor, what testing involves, and how to prepare for the journey ahead.

Watch the webinar here

Session 2: The Results Are In

You’ve received genetic testing results — but what do they mean? With insight from a clinical geneticist and a parent with lived experience, this session unpacks the different types of results, when to seek further advice, and how to navigate both the practical and emotional next steps.

Watch the webinar here

Session 3: Navigating Systems

Feeling overwhelmed by systems after your child’s genetic diagnosis? This session offers practical guidance on the NDIS, healthcare, and hospital systems. You’ll hear from experienced NDIS and Rare Kids navigators and a parent, with tips for plan for reviews, coordinating care, and working effectively with professionals.

Watch the webinar here

Session 4: Shaping the Future

Looking beyond the day-to-day, this session explores what lies ahead for families navigating a genetic diagnosis. With a clinical geneticist and an advocate and consumer research expert, we’ll discuss opportunities to get involved in research, preparing for your child’s long-term needs, and finding ways to make your voice heard and advocate for change.

Coming Soon! Register to watch live or receive the replay

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