by PURA Syndrome Foundation | Jun 29, 2025 | Annual Conference, News, Newsletter
What an unforgettable gathering! Our 2025 PURA Syndrome Conference in Dallas, Texas, USA, brought together a record-breaking 171 in-person participants, including 36 PURA Perfect individuals, along with 82 virtual attendees from around the world. For three incredible...
by PURA Syndrome Foundation | Jun 24, 2025 | News, Newsletter
We are so excited to welcome Celena Lozano and Kris Magill to our Board in 2025! Kris has filled the vacant role of Secretary of the Board of Directors. Celena Lozano Celena is a 4th year Neuroscience PhD candidate at the University of California, Davis. She received...
by PURA Syndrome Foundation | Oct 10, 2024 | News, Newsletter
Welcome, Nancy Boccia We welcomed Nancy Boccia to the board earlier this year! She is a familiar face as she has helped organize our PURA Conferences since 2021. We are so grateful to have her insight and contributions to the PURA Community so far. Enjoy reading her...
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 | Nov 21, 2023 | Newsletter
Volunteer...
by PURA Syndrome Foundation | Nov 19, 2023 | News, Newsletter
Our research liaison Jim Lagowski and board member Melissa Vaught attended the Global Genes conference in September. They were able to network with other Rare Disease Organizations and brought back a lot of insights that will help the PURA Syndrome Foundation with...
