We are pleased to announce our first annual report, highlighting the journey,impact, and vision of PURA Foundation Australia. This report reflects commitment to transparency, accountability, and positive change
www.purafoundation.au/about

#rare #purafoundation #DEE #teamPURA #purasyndrome #research

This past weekend at the PURA Conference in Munich reminded us what makes rare disease research so special: bringing together families, clinicians, and researchers from around the world. We were honored to receive the PURA Hero Award 2026.

#Purafoundation #community #purasyndrome #Rare #TeamPURA

Speech and language research for PURA syndrome 💜🧬
Surveys available in English, French, Dutch, German, Spanish, Portuguese, Italian, Chinese. To be involved email geneticsofspeech@mcri.edu.au
For more details www.purafoundation.au/communication

#TeamPURA #research #pura #rare #PURAsyndrome #speech

February 28th is Rare Disease Day, a day where we recognise the millions of individuals around the world living with rare disease.
Although every diagnosis is different, one thing unites us all: the strength of community.

#Purafoundation #community #purasyndrome #Rare #puraperfect #TeamPURA

PURA Foundation Australia, in collaboration with The Florey and University of Melbourne has begun research to search for more effective and possibly targeted epilepsy treatments for PURA patients. Looking forward to our work in 2025 with The Reid Lab. 💜
#TeamPura #purasyndrome #epilepsy #rare #DEE

Happy Holidays to the PURA families, clinicians, scientists, and support organisations around the world!

We look forward to working together in 2025, in the advancement of research and treatments, and support for families of, and individuals with, PURA syndrome. 💜

#rare #puraperfect #teampura