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.
We aim to facilitate education and awareness, assist in the advancement of research and treatments, and provide support for families of, and individuals with, PURA syndrome.
2025 MELBOURNE MARATHON FESTIVAL October 12th 2025
Walk with Team PURA. We're hitting the streets of Melbourne to raise awareness and research funds for PURA syndrome. Whether you're in it for a run or the 2.5km walk with our PURA families, every step makes a difference.
To Register visit - https://melbmara2025.grassrootz.com/purafoundation
We invite you to join Team PURA and make a difference as you run, jog, wheel or walk your way through the city streets, passing iconic Melbourne landmarks before finishing with a lap of honour around the MCG’s hallowed turf. 💜
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 Research Update 2025
We were honoured to participate in the recent global PURA Syndrome Conference and share an overview of the exciting research initiatives underway in Australia. Our presentation highlights the work being led by Australian researchers and the ongoing efforts of PURA Foundation Australia to drive forward collaboration, innovation, and better outcomes for those living with PURA syndrome. We are proud to be part of a strong and united international community.
Watch the full presentation to learn more about the Australian research landscape and our commitment to increasing understanding, treatments and quality of life for those with PURA syndrome.
Professor Michael Hildebrand and Mel Anderson
Research Affiliates
Keep updated on our socials and with our newsletter
Subscribe here for our newsletter and to keep in touch with the PURA Foundation Australia
