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PURA SYNDROME FOUNDATION BLOG

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Stefano's Rare Disease Day Story

Stefano's Rare Disease Day Story

Megan's Rare Disease Day Story

Megan's Rare Disease Day Story

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Update on Research from the GRN

Update on Research from the GRN

Despite facing several challenges related to COVID-19 in 2020, the PURA Syndrome Global Research Network (GRN) has been hard at work over...

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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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