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...
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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by PURA Syndrome Foundation | Oct 12, 2024 | Awareness, News
by PURA Syndrome Foundation | Oct 11, 2024 | Awareness, News
Here are some basic resources to share with your family and community to increase awareness! PURA 101 page on the Foundation Website: About PURA Syndrome PDF:
