PURA Foundation Australia

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.

The Foundation is deeply committed to advancing clinical and scientific research to improve outcomes for individuals with PURA syndrome. It funds and supports Australian research initiatives, including a clinical communication research program with the Murdoch Children’s Research Institute (MCRI), and epilepsy-focused scientific research undertaken in collaboration with the Florey Institute of Neuroscience and Mental Health and the University of Melbourne. These programs expand knowledge, strengthen evidence to guide care, and contribute toward future precision therapies. By fostering collaboration across scientific, clinical, and family communities, the Foundation helps accelerate discovery and translate research into meaningful impact.

Another priority of the Foundation is education, awareness, and empowerment. To support families from diagnosis and throughout their journey, the PURA Foundation Australia is developing a Community Outreach Kit. This trusted resource will provide essential emotional, educational, and practical guidance, helping families navigate care, access reliable information, and feel less isolated.

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.

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