by PURA Syndrome Foundation | Dec 20, 2024 | News, Together for PURA 2024-25
It is with great excitement and appreciation that we announce that a PURA family has come forward and offered to match donations up to $100,000 for our Together for PURA Campaign! Every donation to our Together for PURA Campaign made through Rare Disease Day, February...
by PURA Syndrome Foundation | Dec 3, 2024 | News
On this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation. If you would like to make a donation this Giving Tuesday, you may do so by following this url: https://givebutter.com/c/pura2024 Please...
by PURA Syndrome Foundation | Nov 26, 2024 | News, Research
Please see below for a research opportunity from PURA Foundation Australia that is open to all PURA families across the globe! PURA Foundation Australia Just launched – Speech and language research for PURA syndrome ! Researchers are looking for families to be...
by PURA Syndrome Foundation | Nov 20, 2024 | News, Research
Registry Update: We have reached 100 registered participants however only 62 have completed all of the modules necessary. Let’s keep this going – the more participants the more we will discover about PURA! Parents and Caregivers, the Patient Registry is so vital...
by PURA Syndrome Foundation | Nov 17, 2024 | Annual Conference, News
We are excited to announce the location of our 2025 conference! Please stay tuned for additional details and hotel information. #purasyndrome #purasyndromeconference
by PURA Syndrome Foundation | Oct 23, 2024 | News
Today, October 23, 2024, we celebrate 10 years since the discovery of PURA Syndrome! Ten years of growth, successes, challenges, in-person gatherings, online meet-ups, happy moments, sad moments and everything in between. On behalf of the PURA Syndrome Foundation, we...
