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

💜 PURA x The Florey.

In 2 weeks families, Foundation and scientists will gather to share research updates and Run As One. Together, we’re uniting the expertise of researchers with the lived experiences of families to accelerate life changing discoveries.

#PURAfoundation #purasyndrome #TheFlorey

Today we launched the #PURA Biobank at @www.helmholtz-munich.de for patients with #purasyndrome. Biosamples will support research and development of treatment strategies. Big thanks to PURA Syndrome Foundation USA for your constant support! #Rare #puraperfect www.helmholtz-munich.de/en/pura-biob...

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

Rare Disease Day is dedicated to the millions of individuals and families around the world affected by rare diseases.
Every story shared, every connection made, and every voice heard enhances our collective impact, creating needed change.
#raredisease #purasyndrome #rare #rdd25 #community #together

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

Hi, I’m Chiara! After joining the Niessing lab in 2023 for my Bachelor’s thesis on the PUR protein family, I returned as a PhD student in 2026. I now study PURA syndrome, combining basic research with a close connection to the PURA community and affected families. #science #labmembers #purasyndrome

Over the last three days, our PhD student Silvia represented the Niessing Labs at the 2026 GSCN Conference in Berlin! 🧬 She shared our research on PURA syndrome, connected with fellow stem cell researchers, and brought home new ideas and inspiration. 🔬

#stemcell #purasyndrome #raredisease #phdlife

In loving memory of our #PURAsyndrome & #LGSsyndrome, angel, Megan, on this #RareDiseaseDay 2026.
#EpilepsyAwareness
💜💚💙