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3:00 pm

January 26 @ 3:00 pm - 4:00 pm EST

Registry Meet-Up: January 26, 2025

Virtual

This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior […]

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis, management, and health. Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication, some facts may change later.

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