Awareness | PURA Syndrome Foundation

Day 8: Does Your Doctor See Multiple PURA Patients?

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...

Day 7: Get Your Gear

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

Day 6: Together for PURA Campaign

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...

Day 5: Increase Awareness by filling out the Global Patient Registry

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...