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2020 PURA Conference - Change of Plans

It is our sad duty to inform you, our families and our community, that we as a board have taken the unfortunate decision to suspend this years in-person PURA syndrome conference.

​​This decision has been very difficult. And it has been discussed extensively. We are concerned with the risks we know of to our families personally and financially due to the global concerns of the Coronavirus, which is currently spreading in an unpredictable way.

We find ourselves in an unknowable situation. We feel a responsibility to you, having at-risk families: We can not ask to expose you to the risks of travel or risk of a communicable condition in which no one can account for. Currently there are countries closing schools and others quarantining airport travelers. None of us want to be responsible for the consequences we can not see in 3 months time.

The board of the PURA Syndrome Foundation is in discussion with the PURA Syndrome Global Research Network (GRN) to provide updates and news to you, our families, in an alternative way this year. We are working on the timeline and the technology.

We understand the greatest value of our anual conferences is the person to person contact, with other families and our research community and we are committed to providing this exchange, even if in a virtual way.

We know that you will all have questions about this decision.

And we welcome them, even if we don't have concise answers yet. We remain committed to providing as many answers, connections, and to inspire our global PURA community.

I'm sorry to miss you this year,

D

Dominic J Spadafore, AIA

President,

PURA Syndrome Foundation

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 .