Contact Us

The PURA Syndrome Foundation welcomes contact from the community.
The foundation has parent liaisons who support families.
If you are a new PURA family, welcome !

To make contact with the Foundation and/or the private parent's group, please email:

Parent and Family Liason

The PURA Syndrome Foundation liaison can be reached at

Data will be processed and used according to the PURA Syndrome Data policy which can be read on our website at

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 .