by PURA Syndrome Foundation | Sep 9, 2023 | Research
Attention PURA Caregivers! Please see information below on an important study being done.
by Amanda Shanks | Mar 11, 2021 | Research
The PURA Syndrome Foundation, in collaboration with the Global Research Network, is happy to share a new review of the PURA gene, “,The Molecular Function of PURA and Its Implications in Neurological Diseases”, which was published today, March 11, 2021, in...
by Amanda Shanks | Feb 21, 2021 | Research
nDespite facing several challenges related to COVID-19 in 2020, the PURA Syndrome Global Research Network (GRN) has been hard at work over the last several months. The GRN held a video conference in November of 2020, where six research groups from Denmark, Germany,...
by Dominic Spadafore | Apr 18, 2020 | Research
Dear PURA community: I hope you are all healthy and this finds you well. I am sure that we are all standing resilient and vigilantly keeping our health and our loved ones safe in these uncertain and scary times.n nRecently we’ve been getting some questions about...
by Dominic Spadafore | Nov 25, 2019 | Research
Dear PURA Families:n n nWe are very proud to be launching the ,,PURA syndrome Global Patient Registry! This registry has been in the works for a couple of years, and is meant to be a repository of patient information that can be used for future studies. It is only...
by Dominic Spadafore | Nov 25, 2019 | Research
I thought I’d remind everyone, in case you missed it, the PURA Global Registry is now started!n nThis is a very exciting time for all of us, and I wanted to drop a quick note to clarify how you, as a parent, can interact with the registry.n nFirst, from our...
