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 families@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