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.
Finding strength in community - Herald Sun Sunday 13th October
Today (SUNDAY), they will band together to run, jog, wheel or walk the Melbourne Marathon to raise funds for desperately needed research into the syndrome.
In just the first year since it was founded the new PURA Foundation Australia has self-funded two key studies. Now it is working with the Murdoch Children’s Research Institute to research speech and communication for PURA syndrome.
“When you’re incredibly rare, your strength is in coming together,”
“Community is everything and we’ve built a community that can work together.”
Families, Clinicians, Scientists and Foundation as one community.
Read or download the article here.
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