by PURA Syndrome Foundation | Nov 13, 2023 | News, Newsletter
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...
by PURA Syndrome Foundation | Nov 11, 2023 | News, Newsletter
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...
by PURA Syndrome Foundation | Nov 9, 2023 | News, Newsletter
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...
by Liz Astridge | Feb 25, 2023 | Newsletter
The February Newsletter is out! Please take a moment to read about the following headlines: A Letter from the Foundation Meet our new Board Members New Research Publication Annual Conference Save the Date World Rare Disease Day PURA Meet Ups Click here to read it,...
