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Support For You And Your Family

If you or your child has PURA syndrome, it’s easy to get caught up in the day-to-day care and routine that surrounds you. But it’s also really important to look after your own wellbeing too.


Talking with other PURA families can be a great way to get support and advice. Together, you can build a strong foundational support network with others who have the experience to understand your journey.

For more information about family support, please reach out to our parent contact Rebecca Nunn (see below) or message us via our Facebook Page

Alone we are rare, together we are strong.    #PURAperfect


A note from our 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 fin
d 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 NDIS 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.
You can reach me
 via eMail at

Bec (Rebecca)

Doctor with Files

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. 


Prof Rick Leventer

Paediatric Neurologist
The Royal Children's Hospital
50 Flemington Road
Parkville Victoria 3052
(03) 9345 5661 

Prof David Amor

Clinical Geneticist

The Royal Children's Hospital
50 Flemington Road
Parkville Victoria 3052
(03) 8341 6315



Prof David Coman
Geneticist, Metabolic Physician
and Consultant Paediatrician

Level 3 Watkins Medical Centre, 225 Wickham Terrace,
Spring Hill QLD 4000

(07) 3832 9876



Dr Anne Ronan 

Adult and Paediatric Clinical Geneticist

Newcastle Medical Genetics

16 Grainger St,

(02) 4962 1811


Dr Cynthia Sharpe
Paediatric Neurologist
Starship Child Health

2 Park Road
Grafton Auckland 1023
(09) 638 0400


Dr Raoul Heller
Clinical Geneticist 

Genetic Health Service NZ Northern Hub, Auckland
(09) 307 4949 


Keep updated with the Foundation Newsletter

To keep updated on the events, research and goals of the PURA Foundation Australia, sign up for our newsletter and education materials.


Newsletters are emailed, providing up to date information. To keep informed and ensure that you never miss an issue please subscribe. 

You can also follow us on social media for regular updates, events and opportunities to connect to our community.





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