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...
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...
by PURA Syndrome Foundation | Aug 28, 2024 | Research
Click here for the Registry Checklist
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...
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...
