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:
 

Kerry Hildring
Please contact her via email at k.hildring@pura-syndrome.org 

Data will be processed and used according to the PURA Syndrome Data policy which can be read on our website at https://www.purasyndrome.org/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 .