New! PURA Sibling Support & Meet Up

We are pleased to announce the launch of our PURA sibling outreach offerings! Our Siblings Ambassador, Chrissie Brock, has been hard at work putting together these initial offerings and has many ideas on how to expand them going forward. Our goal is to offer a variety...

Raising Awareness for Rare Disease Day

Today we are raising awareness of rare conditions such as the one my daughter Sesha has. It is PURA Syndrome, and it is a one-gene variant that has profound effects. When we recognized that something was not right with our beautiful 4-month-old baby and learned that...

Today is World Rare Disease Day!

Today is World Rare Disease Day!  Today is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives.  World Rare Disease Day gives a public and social platform for rare...
New! Self-Care for Caregivers Resources

New! Self-Care for Caregivers Resources

Hello PURA Families and Caregivers! To help celebrate in the months leading up to the 10th Anniversary of the discovery of PURA Syndrome, the PURA Syndrome Foundation partnered with Behavioral Change Specialist and author of The Kindness Method Shahroo Izadi to create...

Giving Tuesday 2023

It has been a wonderful year, and on this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation.  Every donation helps further our mission to support research of, raise awareness for, and serve and...

Shop for a cause!

As you are doing your online shopping, shop for a cause! A portion of all proceeds from our Zazzle store benefits the PURA Syndrome Foundation. #purasyndrome Here’s the link: https://www.zazzle.com/store/purasyndrome
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