The PURA Syndrome Foundation
The PURA Syndrome Foundation is a nonprofit, global foundation to serve, educate, and fund research for the PURA syndrome community. The Foundation brings together families, clinicians, and researchers to create a sense of community, helping make sure that no one feels alone by this rare disease.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on PURA Syndrome
Deciphering Developmental Disorders: A Major Study is Enabling New Diagnoses
A major genetic research project called the Deciphering Developmental Disorders (DDD) study is helping families to receive diagnoses, and, in some cases, even identifying
This Test Could Help Diagnose Rare Diseases More Quickly in Singapore
According to a story from The New Paper, the KK Women’s and Children’s Hospital (KKH) in Singapore has successfully developed a test that could make
Editor’s Choice: Rare Disease News on the Founder of the Ice Bucket Challenge & Senator John McCain
It’s getting hot out there… So you may as well read some news while staying cool inside if you’re in the US! This week we
How a Son’s PURA Syndrome Brought His Family Closer
According to The Newport Daily News, for Danielle and Kyle Ray, it was an all-too-common love story. They were school-aged sweethearts who married in their
How to Find Joy in Daily Life with PURA Syndrome
Paige Hildring is nine years old. She’s one of 108 people in the entire world with PURA Syndrome. PURA Syndrome is a neurodevelopmental disorder and
