by PURA Syndrome Foundation | Aug 25, 2026 | News, Research
We are excited to announce that the new PURA Syndrome Patient Registry is now open to families! Built in partnership with COMBINEDBrain and Matrix, the PURA Syndrome Patient Registry is now open for enrollment. The registry will help researchers build a natural...
by PURA Syndrome Foundation | May 4, 2026 | Research
The PURA Syndrome Foundation is proud to announce the funding of four research grants totaling $247,000 in the inaugural year of the PURA Syndrome Foundation Grant Program. This marks the largest research investment in the Foundation’s 11-year history, which is...
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...
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...
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...
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...
