PURA Foundation Australia

🏃‍♀️ Walk. Run. Give. Every Dollar Supports Research Progress 🧬

This August we’re taking part in the Sydney Marathon to raise vital funds for PURA syndrome research.

Donate here 👉 sm25.grassrootz.com/purafoundation

Every dollar goes directly towards new research, treatments and hope for families. 💜

📣 Only 2 weeks to go!

A big THANK YOU to all the PURA families who have already joined our Communication Study. The study closes 31st July. All countries can be involved.

👉 www.purafoundation.au/communication

Please register today.
Because every voice matters. 💜

💜 Today is Purple Day – World Epilepsy Day 💜

March 26th is an international event dedicated to raising awareness about epilepsy. People wear purple to show support for those living with the condition and to encourage understanding of epilepsy and its impact on individuals and their families.

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

PURA syndrome is a rare neuro-developmental disorder. The PURA gene is essential for the formation of pur-alpha, a protein which controls the activity of various genes, transport of different RNA molecules and generation of multiple proteins and is also vital for DNA replication.

#pura #rare 💜

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

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

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

Congratulations Elena 👏🏻💜

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

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

Thank you 💜👏🏻

Can you add us to this please?