by PURA Syndrome Foundation | Feb 1, 2025 | Awareness, News
In less than five weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. Rare disease day is dedicated to raising awareness among the general public and key decision-makers...
by PURA Syndrome Foundation | Jan 30, 2025 | Awareness, Research, Resources
We are happy to announce our partnership with the University of Pennsylvania’s Orphan Disease Center JumpStart Program! As part of their Genetic Counseling Student Exchange program we will have a student intern starting in February to work on a four month project with...
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...
