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2024 Annual Report

We are pleased to announce the release of our 2024 Annual Report! We are grateful for each of you who continue to support us in furthering our mission to drive research, raise awareness in the general community, as well as connect, educate, serve and empower families...
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...