Research | PURA Syndrome Foundation

Why are Natural History Studies Important for Rare Diseases?

by PURA Syndrome Foundation | Aug 22, 2024 | Research

Why are natural history studies important for rare diseases? How do I include my PURA perfect individual in the PURA Syndrome Global Patient Registry? Find the answers to these important questions and more by watching Dr. David Hunt present at our most recent PURA...

Why is the PURA Patient Registry Important?

by PURA Syndrome Foundation | Jul 11, 2024 | Research

One of the big topics at the Annual Conference was our PURA Patient Registry. This is so vital to our understanding of PURA Syndrome and we need as many participants as possible. If you’d like to hear the latest update that Dr. Hunt gave at our conference, go...

New Research!

by PURA Syndrome Foundation | Jun 27, 2024 | News, Research

NEW RESEARCH A new paper was just published this week by members of our Global Research Network, Guido Rubboli and Katrine M. Johannesen and their colleagues at the University of Copenhagen, on the “differences in manifestations of epilepsy and developmental...

Do you need help completing your PURA Patient Registry?

by PURA Syndrome Foundation | Jun 11, 2024 | Research

Do you need help completing your PURA Patient Registry? We are excited to announce that we are now offering confidential, one-on-one appointments with our research nurse, Tessy or PURA Aunt and Retired Nurse, Lyn. They can offer assistance with navigating the modules...

Weill Cornell Medical College Study for PURA Caregivers

by PURA Syndrome Foundation | Sep 9, 2023 | Research

Attention PURA Caregivers! Please see information below on an important study being done.

PURA Gene Review Published in “Frontiers in Genetics”

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...