PURA Foundation Australia
Welcome
The PURA Foundation Australia is a non-profit charitable organisation, that has been established to provide national and local support systems for individuals diagnosed with PURA syndrome and their families, across Australia and New Zealand.
The Foundation funds pioneering research, provides support and education for families, and advocates for improved care and treatment for PURA syndrome.
PURA x The Florey
Education Day and Melbourne Marathon Festival, October 2025
As part of the Melbourne Marathon Festival 2025, members of Team PURA took part in a special behind-the-scenes visit to The Florey Institute, one of Australia’s leading neuroscience research centres.
The event brought together families, researchers, and the PURA Foundation team for a morning of connection, learning, and collaboration. Participants heard the latest updates on PURA syndrome research directly from the scientists leading this work and took part in a guided laboratory tour to see where vital discoveries are being made.
A highlight of the day was hearing from families who shared their lived experiences of life with PURA syndrome. Their insights offered powerful context for the research underway and reminded everyone of the impact that science can have on real lives.
The visit also showcased how PURA family fundraising is helping to advance this important work, from supporting dedicated researchers to enabling new discoveries that bring hope to the global PURA community.
Events like this reflect what makes the PURA Foundation unique: families, scientists, and supporters working side by side to drive understanding, collaboration, and progress.
💜 Because real progress is never made alone. It’s made together. Together, we're driving change.
PURA x The Florey 💜
To see Team PURA Marathon event photos visit our MelbMara 2025 Page
Developmental and Epileptic Encephalopathy Research (DEER) study for PURA syndrome
Through the Developmental and Epileptic Encephalopathy Research (DEER) Study, we’re working to better understand the clinical features of PURA syndrome, with the goal of identifying treatment needs and developing key outcome markers for future clinical trials.
This international research aims to define the full spectrum of epilepsy seen in PURA syndrome by carefully characterising both epileptic and non-epileptic events. Importantly, the study also considers the broader picture, including developmental delays, cognitive and motor challenges, and medications that have been trialled, to build a comprehensive understanding of the lived experience of individuals with PURA.
Participation is open to individuals with a confirmed diagnosis of PURA syndrome or 5q31.3 deletion syndrome (including PURA), whether or not they experience seizures. By involving both individuals with and without epilepsy, this study will help us identify patterns and differences that may guide future interventions.
To join this research study visit the DEE Page here.
Every participant brings us one step closer to improving care and
unlocking treatment possibilities for the PURA community.
PURA Foundation Australia 2025
Research and Community Update
We were honoured to participate in the 2025 global PURA Syndrome Conference and share two presentations showcasing PURA Foundation Australia initiatives.
🎥 Australian Research Overview
Our first presentation highlights the exciting research initiatives underway in Australia, led by dedicated researchers and supported by the PURA Foundation Australia's commitment to collaboration, innovation, and better outcomes for those living with PURA syndrome.
🎥 Community Update - Australia
Our second presentation shines a light on the strength of our community, focusing on:
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Education and Advocacy – Empowering families and the rare disease community
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Awareness – Creating visibility and collaboration
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Community – Fostering spirit and belonging
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Support – Standing beside families on their PURA journey
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Research – Driving family-focused scientific and clinical work
We are proud to be part of a strong and united international community. Watch our presentations to learn more about our Australian research, our values, and our ongoing commitment to improving the lives of those with PURA syndrome.
Professor Michael Hildebrand and Mel Anderson
Research Partners
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