The HARMONY Alliance Patient Cluster is a unique group of 9 European Patient Umbrella Organizations working in the different areas of hematological diseases within the HARMONY Alliance. The 9 Patient Organizations combine years of expertise in patient-led scientific research and policy advocacy, and use this experience to the benefit of the affected patient communities.
The Patient Cluster and their patient communities are consistently involved in the definition of outcomes, the design of Research Projects and the information of patients. In addition the Patient Cluster also make sure that there is a reliable bi-directional flow of information within and outside of the HARMONY Alliance. For the first time in a major research project, the patient community sits at the table as truly equal partners to researchers, industry and regulators. The HARMONY Alliance Patient Cluster experience will also be captured and promoted in publications and on social media.
The HARMONY Alliance Patient Cluster developed a Standard Operating Procedure on how to engage participation of consulting and informing Patient Organizations and patients in Research Projects.
- Open the PDF to read the details of the HARMONY Alliance Patient Cluster Standard Operating Procedure (SOP) >
- View the HARMONY Alliance Patient Cluster SOP infographic explaining the steps to take >
- View the HARMONY Alliance SOP for the submission of Research Projects >
- View the special form necessary to submit HARMONY Alliance Research Projects >
Find out more about each Patient Organization of the HARMONY Alliance by clicking on their logo below.
