Advocacy Raises Awareness!

Advocacy Raises Awareness!

Rare Disease Day is 19 days away! We’d like to share this story about how a PURA family is raising awareness for PURA Syndrome by lobbying their state legislature for better healthcare. Do you have a story to share? Put it in the comments below! Interested in joining...

Giving Tuesday 2024

On this international day of giving, we want to express our gratitude for your continued support of the PURA Syndrome Foundation. If you would like to make a donation this Giving Tuesday, you may do so by following this url: https://givebutter.com/c/pura2024 Please...
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