
PURA Syndrome Foundation | Connecting, Educating, Serving, and Empowering Families Impacted by PURA Syndrome
812235818
Berwick, ME 03901 USA
purasyndrome.org
PURASyndrome
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News

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 Study in Rare Disorders using MRI scans to understand how the brain is made differently in genetic syndromes. To learn more about this study and how to participate, visit purasyndrome.org/orp (fb)

2025 PURA Syndrome Conference ✨ Meet the Speakers ✨ Session: Clinicians Panel Dr. David Hunt is a Consultant Clinical Geneticist, based in Southampton, UK. He received his PhD in Molecular Pathology at University College London and completed Foundation and Medical Training in London before relocating to Southampton in 2012. He has co-authored several peer-reviewed articles about PURA syndrome, including one of the first two papers characterising PURA Syndrome in October 2014. He was involved in organizing the first PURA Syndrome Annual Conference in the summer of 2015 and continues to work closely with the PURA Syndrome Foundation. We hope to see you there! #PURAConference2025 #PURASyndrome #raredisease (fb)

Poslední diskuze
Nearby
4.5
Berwick
About the organization
- H20, P12 -
2025 Conference Registration Open. Registration is now open for our 2025 PURA Syndrome Conference which will take place June 2729 2025 in Dallas Texas USA. Our mission is to support and drive research raise awareness in the general community as well as connect educate serve and empower families impacted by PURA Syndrome. OneonOne Appointments are Now Available to Help you Complete your Patient Registry.
Birth Defects, Genetic Diseases Research Fund Raising and/or Fund Distribution