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
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...
by PURA Syndrome Foundation | Oct 15, 2024 | Awareness, News
Day 5: Parents and Caregivers, the Patient Registry is so vital to our understanding of PURA Syndrome and we need as many participants as possible. If you’d like to hear the latest update that Dr. Hunt gave at our conference, go to: https://youtu.be/BsGjQmKq88s...
by PURA Syndrome Foundation | Oct 13, 2024 | Awareness, News
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