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