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 | Jun 10, 2024 | Awareness, Resources
We’re excited to share that we’ve joined the Rare Epilepsy Network, a consortium of rare disorders working together on epilepsy research, advocacy and drug development.We hope this partnership will help connect our community with the latest research in...
by PURA Syndrome Foundation | Feb 14, 2024 | Resources
Hello PURA Families and Caregivers! To help celebrate in the months leading up to the 10th Anniversary of the discovery of PURA Syndrome, the PURA Syndrome Foundation partnered with Behavioral Change Specialist and author of The Kindness Method Shahroo Izadi to create...
