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:
by PURA Syndrome Foundation | Oct 10, 2024 | Awareness, News
Whether your child is school aged or beyond, there are ways to spread awareness to their community and peers about PURA Syndrome! Here are some ideas and some language to get you started: Awareness Card We have a parent willing to edit the template for parents and...
by PURA Syndrome Foundation | Sep 30, 2024 | Awareness
Join us in celebrating this special time of year as we commemorate the 10th Anniversary of the Discovery of PURA Syndrome! PURA Syndrome Awareness Day is Wednesday, October 23! Show your support for PURA Syndrome by clicking this link, download the Facebook Frame...
