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

Global Genes Conference

Our research liaison Jim Lagowski and board member Melissa Vaught attended the Global Genes conference in September. They were able to network with other Rare Disease Organizations and brought back a lot of insights that will help the PURA Syndrome Foundation with...

Thank you Jennifer!

We’d like to take a moment to express our gratitude to Jennifer Bierling, who is stepping down from our board. She has been a wonderful team member and was instrumental in the launch of our Global Patient Registry last year. Her hard work helped the project get off...
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