Global Genes Conference
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...Introducing our new Research Liaison, Jim Lagowski
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...Thank you Jennifer!
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...Help us complete 100 Patient Registries by October 2024!
Parents & Caregivers: We need YOUR help to take our research to the next level The Foundation, in partnership with the University of Southhampton in the UK, made a full launch of the Global Patient Registry in 2022. Since then, only 35 registries have been...Attention PURA Siblings!
We are so excited to introduce Chrissie Brock as our new Siblings Ambassador. After meeting at our 2023 PURA Conference in the UK, Chrissie reached out to volunteer to help the Foundation to fill the role of our Siblings Ambassador. She has spent the past few months...
PURA SYNDROME is turning 10 in 2024!
Did you know that October 23, 2024 will mark the 10th Anniversary of the discovery of PURA Syndrome? We are putting together a year-long celebration with monthly themes so stay tuned to social media and email for more details. Interested in helping? Please...
2024 PURA Syndrome Conference
We are excited to announce that our 2024 PURA Syndrome Conference will take place June 21-23, 2024 in Chicago, IL, USA. Please stay tuned for more details including hotel blocks and information about the Abilities Expo happening nearby on the same weekend!...
Weill Cornell Medical College Study for PURA Caregivers
Attention PURA Caregivers! Please see information below on an important study being done.
