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...
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 | Oct 10, 2024 | News, Newsletter
Welcome, Nancy Boccia We welcomed Nancy Boccia to the board earlier this year! She is a familiar face as she has helped organize our PURA Conferences since 2021. We are so grateful to have her insight and contributions to the PURA Community so far. Enjoy reading her...
