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2019 BOSTON Agenda!

In Case you missed it: Here is the 2019 Boston Conference agenda.

Check it our here!

You will also be interested to know that the conference registration has been extended to the end of this week, Wednesday, June 5, so it's not too late to join us in Boston!

Looking forward to seeing you all there!


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 .