The PSP Society of Canada Endorses CORD Framework for Ethical Collaboration


From time to time, our organization may be called upon to work with healthcare professionals, researchers, or pharmaceutical companies who have an interest in PSP and related brain disorders.  These interactions provide an important opportunity to share our community’s experiences and to advocate for patients and families.  It is important to us that any of these interactions are carried out according to the highest ethical standards and best practices.  We’ve equipped ourselves for this work by receiving training through the European Organization for Rare Disorders (EURORDIS)’s summer school, and we stay current and connected with other Canadian patient groups as members of the Canadian Organization for Rare Disorders (CORD).  We endorse CORD’s Consensus Framework for Ethical Collaboration, which you can download here