Research Opportunity: Volumetrics Study in Rare Disorders

by PURA Syndrome Foundation | May 28, 2025 | Research

Attention PURA Parents and Caregivers! Do you have an MRI scan of your PURA perfect individual that you are willing to share for research purposes? Dr. Jeff Waugh, a pediatric neurologist and neuroscientist at UT Southwestern in Texas, USA, is conducting a Volumetrics...

New Year, New Partnership!

by PURA Syndrome Foundation | Jan 30, 2025 | Awareness, Research, Resources

We are happy to announce our partnership with the University of Pennsylvania’s Orphan Disease Center JumpStart Program! As part of their Genetic Counseling Student Exchange program we will have a student intern starting in February to work on a four month project with...

PURA Syndrome Australia Launches Speech/Language Study

by PURA Syndrome Foundation | Nov 26, 2024 | News, Research

Please see below for a research opportunity from PURA Foundation Australia that is open to all PURA families across the globe! PURA Foundation Australia  Just launched – Speech and language research for PURA syndrome ! Researchers are looking for families to be...

Registry Update – 62 Completed

by PURA Syndrome Foundation | Nov 20, 2024 | News, Research

Registry Update: We have reached 100 registered participants however only 62 have completed all of the modules necessary. Let’s keep this going – the more participants the more we will discover about PURA! Parents and Caregivers, the Patient Registry is so vital...

Research Updates – September 2024

by PURA Syndrome Foundation | Oct 7, 2024 | News, Newsletter, Research

Patient Registry Update Parents and Caregivers – We Need Your Help to complete at least 100 Patient Registries! Dr. Hunt gave an update at our June Conference as to where we are at with our Global Patient Registry. We currently have 51 completed registries with...

Registry Checklist

by PURA Syndrome Foundation | Aug 28, 2024 | Research

Click here for the Registry Checklist