Pura Syndrome Foundation

The PURA Syndrome Foundation is a globally focused charitable organization, registered in the USA as a 501(c)(3) tax-exempt non-profit corporation. The Foundation supports and educates patients and their families, providing a global community. Governed by volunteer international board members, the Foundation provides the global community with a place to belong. For those isolated by rare disease, the Foundation provides access to medical research being completed and educates people about the condition. Foundation, families, clinicians and researchers together as one community. We keep our families informed by organizing a yearly global conference, developing educational materials and sending out quarterly newsletters.