Donation of 10.000 Euro to our lab
We are so grateful! PURA Syndrome Deutschland e.V. makes donation to support our research on #PURA syndrome at @helmholtzmunich.bsky.social, #Rare #puraperfect.
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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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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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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
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