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. Governed by volunteer international board members, the Foundation provides the global community with a place to belong for those who may feel isolated by rare disease. The Foundation also provides access to medical research being completed and educates people about the condition. We keep our families informed by organizing a yearly global conference, developing educational materials and sending out newsletters.