PURA Gene Review Published in "Frontiers in Genetics"
The PURA Syndrome Foundation, in collaboration with the Global Research Network, is happy to share a new review of the PURA gene, "The...
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Stefano's Rare Disease Day Story
Francesca Greco gave birth to a beautiful baby boy, Stefano, in 2018 in Italy; however, after noticing early delays, Francesca states...
Megan's Rare Disease Day Story
In 2014, Megan was one of the first 11 individuals identified with a genetic defect on the PURA gene and “PURA Syndrome was born.” Mary...
Update on Research from the GRN
Despite facing several challenges related to COVID-19 in 2020, the PURA Syndrome Global Research Network (GRN) has been hard at work over...
Joshi's Rare Disease Day Story
Caroline Maria Thorpe from Gran Canaria, Spain, was thrilled to welcome her second child, Joshua, into the world in October of 2013 after...