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Come Join Our Team!

The success of the PURA Syndrome Foundation comes with a need to grow our Board of Directors. We are currently seeking to fulfill the role of Vice President of the Board of Directors.

This role is generally to assist the president with policies and procedures, as well as providing additional perspective to the board. We have posted the job description here. Please consider helping us, so that we may continue to help you!

E-mail me your questions or interest: and please include 'Vice-President' in the subject.

Thank you! #PURAstrong!


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 .