2020 PURA Syndrome Conference


The 5th Annual PURA Syndrome Conference scheduled for June 26th through June 28th, 2020, in Cambridge, England, United Kingdom,
has been canceled.


 Due to uncontrollable risks associated with the Coronavirus (COVID-19) and it's unpredictable spread, the Foundation has decided to cancel the 2020 PURA Conference this year.   In place of this year’s conference, we will host a series of webcasts highlighting research updates, the patient registry, and other topics of interest to our families.  We understand the greatest value in attending our annual conference is the personal interaction between family members and researchers, and we are committed to providing this exchange, even if in a virtual way.

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 .