PURA Syndrome Foundation Information

The PURA Syndrome Foundation is a globally focused charitable organisation, 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. We keep our families informed by organizing a yearly global conference, developing educational materials and sending out quarterly newsletters. Our biggest annual event is a conference where the families of patients with PURA syndrome can convene, support each other and share resources. Families also hear from medical researchers who are working to understand PURA syndrome. Bringing the families and researchers together at this event, increases understanding and knowledge for research. This in turn, enhances the quality of life for patients and their families. Foundation, families, clinicians and researchers together as one community.