PURA Foundation Australia
Support for You and Your Family
Caring for a child with PURA syndrome can often mean focusing on the daily routine and responsibilities, but your own wellbeing matters just as much. Connecting with other PURA families can offer valuable support, shared understanding, and practical advice. By building relationships with those who truly understand your journey, you create a stronger, more supportive foundation for yourself and your family.
For more information about family support, please reach out to one of our parent contacts below.
Alone we are rare, together we are strong. #PURAperfect
A note from our Victorian Parent Contact, Rebecca Nunn
When my son was diagnosed with PURA Syndrome at 14 months, my husband and I were completely overwhelmed. We felt alone and didn’t know where to start or how to process the news.
With the support of the PURA Foundation Australia, you are not alone.
You will find a community of people who understand what you are going through and are here to provide you with whatever you need at any stage of your PURA journey.
We have a PURA parent support group specifically for Australia and New Zealand families. Here we can discuss issues including equipment, education and government funding questions families may have. Please contact me if you would like to join. I would love to hear from you and support you in any way that I can.
Bec (Rebecca)
PURA Foundation Australia - Parent Support
The PURA Family Support Positions are held by experienced parents across Australia and New Zealand who provide guidance and connection for both new and existing families. These roles are dedicated to offering peer support, sharing lived experience, and helping families feel informed, supported, and less alone on their PURA journey. Please connect with them via email below.
PURA Foundation Australia - PURA Clinical Care Network
The PURA Clinical Care Network consists of clinicians within Australia and New Zealand who assist our Foundation in supporting PURA families, and educating institutions and other clinicians about PURA syndrome.
Melbourne
Prof Rick Leventer
Paediatric Neurologist
The Royal Children's Hospital
50 Flemington Road
Parkville Victoria 3052
(03) 9345 5661
neurology.department@rch.org.au
Prof David Amor
Clinical Geneticist
The Royal Children's Hospital
50 Flemington Road
Parkville Victoria 3052
(03) 8341 6315
Brisbane
Prof David Coman
Geneticist, Metabolic Physician
and Consultant Paediatrician
Level 3 Watkins Medical Centre, 225 Wickham Terrace,
Spring Hill QLD 4000
(07) 3832 9876
reception@drdavidcoman.com.au
Sydney
Dr (Elizabeth) Emma Palmer
Paediatrician and Clinical Geneticist
Sydney Children’s Hospital
High St, Randwick
NSW 2031
Newcastle
Dr Anne Ronan
Adult and Paediatric Clinical Geneticist
Newcastle Medical Genetics
16 Grainger St,
LAMBTON NSW 2299
(02) 4962 1811
Auckland
Dr Cynthia Sharpe
Paediatric Neurologist
Starship Child Health
2 Park Road
Grafton Auckland 1023
(09) 638 0400
scheduling@adhb.govt.nz
Dr Raoul Heller
Clinical Geneticist
Genetic Health Service NZ Northern Hub, Auckland
(09) 307 4949
www.adhb.govt.nz
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