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...
by PURA Syndrome Foundation | Nov 17, 2023 | News, Newsletter
We’d like to welcome our new Research Liaison and PURA Uncle, Jim Lagowski! Jim has been an instrumental part of the team so far in helping organize our Global Research Network Meeting at our annual conference, helping our board members understand some of the more...
by PURA Syndrome Foundation | Nov 15, 2023 | News, Newsletter
We’d like to take a moment to express our gratitude to Jennifer Bierling, who is stepping down from our board. She has been a wonderful team member and was instrumental in the launch of our Global Patient Registry last year. Her hard work helped the project get off...
