Our final webinar in the series steps back from the day-to-day and explores the bigger picture — and what the future might hold for your child and family.

As research and treatment options evolve, families have more ways to contribute, connect, and influence change — through formal advocacy, rare-disease networks, or individual action. Whether you’re curious about research participation, preparing for your child’s long-term needs, or finding ways to make your voice heard, this session will help you feel informed and ready for the road ahead.

We’ll be joined by a clinical geneticist, and an advocacy leader and consumer research expert to explore key issues that can shape your child’s future.

Together they’ll discuss

Opportunities to get involved in research — from finding out what’s available to deciding what’s right for your family

Planning for the long term — practical steps for transition to adult services and preparing for changing support needs over time

How families can contribute to advocacy and systemic change

About the Speakers

Dr Emma Palmer, Clinical Geneticist

Dr Emma Palmer is a Clinical Geneticist at Sydney Children’s Hospitals Network and a lecturer at UNSW. She is passionate about improving the diagnostic and care journey for individuals with rare genetic conditions and their families. Her work focuses on clinician education, increasing diagnostic accuracy, and connecting families with evidence-based treatments and support. Emma has published over 100 peer-reviewed articles and is committed to centring the patient and family voice in all her research.

Kris Pierce, Consumer Research Expert
As Director of Consumer Involvement at Child Unlimited, UNSW, Kris Pierce is a recognised leader in healthcare advocacy and consumer engagement. She co-founded SCN2A Australia and has contributed to the work of the International League Against Epilepsy (ILAE), Global Genes, and The Epilepsy Foundation. Inducted into the Victorian Women’s Honour Roll and nominated for the Children’s Healthcare Australasia Medal of Distinction, Kris champions patient and family voices as central to healthcare decision-making.

About the Webinar series
This four-part webinar series, hosted by Belongside Families in partnership with Genetic Alliance Australia, shares insights from parents and professionals to help you make sense of the genetic testing process and the emotional and practical realities involved. 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.

Who this event is for

For parents and carers who are exploring a genetic explanation for their child’s health or development

Professionals are also welcome to join webinar or register to receive the recording.

What to expect

This webinar is a welcoming space designed for parents and caregivers to listen, learn, and leave with practical tools and skills.

Led by experienced peer facilitator Bree, who shares her lived experience, insight, and perspective to support other parents.

The webinar will be recorded, giving you the flexibility to watch live or at your convenience.

If you can’t attend live, a recording will be emailed to all registrants within 7 days of the event.

Important information

This event will be held online via Zoom.

As part of your event registration, you’ve been added to our mailing list. You can unsubscribe at any time.

Belongside Families provides general information, peer support, and shared lived experience— we do not provide medical/professional advice or counselling. Any information shared during the event is intended to support and empower families and should not be considered a substitute for professional advice or care.

Funded by the Australian Government Department of Social Services. Visit www.dss.gov.au for more information.