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