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...
by PURA Syndrome Foundation | Oct 22, 2024 | News
Help us honor those we have lost 💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙 #puraangels #purasyndrome #puraawareness #purafoundation #puraperfect
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...
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...
by PURA Syndrome Foundation | Oct 19, 2024 | Awareness, News
Wear blue on October 23 to show your support of PURA Syndrome! #purasyndrome #puraawareness #purafoundation #puraperfect #togetherforPURA
by PURA Syndrome Foundation | Oct 18, 2024 | Awareness, News
One of the biggest questions we get from new families is how to find doctors familiar with PURA Syndrome. We’ve been compiling a directory of doctors known to us that see multiple PURA patients and are experts in their specialties. This serves not only to help...
by PURA Syndrome Foundation | Oct 16, 2024 | Awareness, News
Check out our zazzle store to get your PURA Syndrome and PURAperfect gear! A portion of the proceeds is donated to the PURA Syndrome Foundation. #purasyndrome #puraawareness #purafoundation #puraperfect
by PURA Syndrome Foundation | Oct 16, 2024 | Awareness, News, Together for PURA 2024-25
At our 2024 Conference, we launched our year-long Together for PURA Campaign, where we embarked on a bold mission to raise $250,000. These funds are important to continue and increase the initiatives of the global PURA Syndrome Foundation. Our top priorities and needs...
