Registry Update – 62 Completed

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...

2025 PURA Conference

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

Today is PURA Syndrome Awareness Day and our 10th Anniversary!

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...

Remember our PURA Angels

by PURA Syndrome Foundation | Oct 22, 2024 | News

Help us honor those we have lost 💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙 #puraangels #purasyndrome #puraawareness #purafoundation #puraperfect  

Two Days Away!

by PURA Syndrome Foundation | Oct 21, 2024 | Awareness, News

Consider donating $10 (or more!) to the PURA Syndrome Foundation in honor of our 10th Anniversary by clicking here OR Donate your time by volunteering for the Foundation. Click here to fill out our volunteer form. #purasyndrome #puraawareness #purafoundation...

Day 10: Share Your Story!

by PURA Syndrome Foundation | Oct 20, 2024 | Awareness, News

Each one of us has a story that brings us to where we are today. We invite you to take a few moments to write or record a video of your unique PURA Story. By sharing our story, we are collecting the moments, memories and feelings that make us part of this...