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PURA Research

The PURA Foundation Australia is committed to supporting individuals with PURA syndrome and their families, as well as working with researchers and the medical community to increase understandings and improve treatment options.

We aim to advance knowledge of PURA syndrome and the PURA gene by supporting researchers, universities, research institutes and hospitals, with a commitment to encouraging innovation and excellence in medical and scientific research.

Our areas of focus include:

  • Clinical research

  • Biobanking

  • Epilepsy/Neurological research

  • Applied/Translational research

  • Diagnostic testing

To speak with us about research please contact Mel Anderson

Research is creating new knowledge.    #PURAresearch

PURA Foundation Australia Scientific and Clinical Advisory Team
The PURA Foundation Australia Scientific and Clinical Advisory Team assist our Foundation in undertaking research and educating the community about PURA syndrome. 

Prof Richard Leventer

TEAM LEADER Neurologist
RCH Melbourne VIC
Group Leader - MCRI 


Dr Raoul Heller

Clinical Geneticist
Genetic Health Service
New Zealand


Prof Michael Hildebrand


Dr Anne Ronan

Clinical Geneticist
Medical Genetics
Newcastle NSW

PURA syndrome research opportunities.

The PURA Foundation Australia supports global research initiatives for PURA syndrome as well as research projects across Australia and New Zealand.

Desk with Stethoscope

Ongoing - PURA Natural History Study (Australia and New Zealand)

​To be announced for Rare Disease Day Feb 29th 2024

Science Lab

Ongoing - PURA Biobank

The PURA Biobank (Helmholtz Munich, Germany) will involve the collection of a combination of prospective and retrospective samples from consenting PURA syndrome patients globally. The samples will be used for research with the long-term goal to understand and develop treatment strategies for PURA syndrome patients. The PURA biobank is expected to commence late 2023. 

The PURA Foundation Australia will be developing ethics agreements and sample kits for Biobank Storage in Melbourne, for Australian and New Zealand patients. These samples can be used for loc
al research projects as well as inclusion in the PURA Biobank. For further information please email Mel Anderson.

We Need Your Support Today!

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