PURA Foundation Australia
Welcome
The PURA Foundation Australia is a national not-for-profit organisation dedicated to improving the lives of individuals diagnosed with PURA syndrome and their families across Australia and New Zealand.
Established to address the significant gaps in awareness, clinical knowledge, and coordinated support for this rare and complex neuro-developmental condition, the Foundation works in partnership with families, clinicians, researchers, and broader community stakeholders to drive understanding, strengthen support systems, and advance meaningful progress in care and research.
Through education, advocacy, research leadership, and strong community connection, the PURA Foundation Australia is building a more informed, supported, and hopeful future for everyone impacted by PURA syndrome.
Rare Voices Australia - Rare Portal for PURA Syndrome
The PURA Foundation Australia is proud to share the launch of the PURA syndrome page on the Rare Voices Australia RARE Portal. This page brings together trusted information resources and links developed in collaboration with the PURA community to support families clinicians and advocates across Australia. It represents an important step in improving visibility access to reliable information and recognition of PURA syndrome within the rare disease landscape
The page includes dedicated sections covering diagnosis and genetics common features and health considerations clinical care and management current research and links to relevant supports and services. It also provides guidance for health professionals, government derpartments and families navigating care across different life stages helping promote consistent informed and coordinated support for people living with PURA syndrome.
Visit PURA on the Rare Portal
Launching for Rare Disease Day 2026
The PURA Community Hub
We’re delighted to announce the launch of the PURA Foundation Australia Community Hub, a dedicated digital space built to support families affected by PURA syndrome in Australia and New Zealand.
The Hub brings together trusted information, tailored resources, and peer connection opportunities to help families navigate diagnosis, care and daily life with greater confidence and understanding. It is part of a broader Community Outreach initiative designed to reduce isolation, offer practical guidance, and make it easier for families to find support, services and news that matter most to them.
The Community Hub will connect families with peer-to-peer networks, links to health and disability support systems, and curated materials that reflect outcomes from clinical and genetics research in family-friendly language. By centralising support, data and lived-experience insights, the Hub aims to strengthen community bonds, empower parents and caregivers and ensure that every PURA family in Australia and New Zealand feels seen, heard and supported.
Celebrating Rare Disease Day 2026
with our researchers at The Florey
Announcing Friday !
Professor Chris Reid, Amy Bowen and Mel Anderson
Support PURA Foundation Australia in the Brisbane Marathon Festival 2026
PURA Foundation Australia supports world-leading research led by Professor Chris Reid, focused on understanding the underlying causes of PURA syndrome and identifying targeted epilepsy therapies.
As Professor Reid explains, “Our hope is to better understand what is causing the disease. By understanding this, we can design therapies that are more precise in the hope of helping not just the seizures, but the myriad of other symptoms these individuals have.”
This collaborative project with The Florey and the University of Melbourne will also help inform future clinical trials and provide clearer guidance for families living with PURA syndrome. By supporting Team PURA at the Brisbane Marathon Festival in June 2026, every dollar raised brings us closer to new research and treatments for those affected by PURA syndrome.
Research Partners
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