Navigating Systems: Genetic Webinar Series

Feeling overwhelmed by systems after your child’s diagnosis? You’re not alone.  

From the NDIS to health and hospital systems, it can be hard to know where to start or how to make the systems work together. This session offers practical guidance to help you feel more informed and prepared to support your child’s daily life. 

We’re joined by an experienced NDIS navigator who specialises in helping families access and navigate supports, a clinical nurse specialist and care navigator working in rare and genetic conditions, and a parent and disability advocate who brings the lived experience of walking this path with their child and family. 

We’ll explore 
• How to apply for the NDIS and navigate reviews 
• Tips for working effectively with health professionals and services 
• Strategies for coordinating care across multiple systems 

About the Speakers 

Lauren Buck, NDIS Navigator 
 

Lauren Buck is the NDIS Navigator at the Mito Foundation, which supports people affected by mitochondrial disease. In her role, she empowers individuals and families to access the NDIS, understand their rights and options, and advocate for the support they need. A qualified Occupational Therapist, Lauren has worked across government, private, and not-for-profit sectors, including as a Manager for an NDIS Early Childhood Partner. 

Nika Kulaweera, Clinical Nurse Specialist 
 
Nika is a Clinical Nurse Specialist in Clinical Genetics at Sydney Children’s Hospital Network and a Rare Kids Care Navigator. She supports families facing complex healthcare journeys with compassion, practical help, and deep system knowledge — from coordinating care and compiling rare disease passports to connecting families with financial and disability supports. Nika is a tireless advocate for improving access and empowering families through every step of their journey. 

Helen Johnson, Parent Speaker 
 
Helen is a parent of a son who was born with an extremely rare syndrome causing multiple severe and profound disabilities. He became a paraplegic in 2009 due to a spinal cord injury following a post-operative complication. Helen has decades of experience as a family carer and has worked with the Association for Children with a Disability since 2004 as a Support Advisor and Community Education Facilitator. She is Vice-President of Carers Victoria, a National Carer Ambassador with Carers Australia, and a facilitator for the Healthy Mothers Healthy Families program. 
 

 
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.