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...

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:
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