AMYlife is the result of close collaboration with international member organizations of the Amyloidosis Alliance and world-renowned physicians. This cooperation maximizes the study’s impact by integrating perspectives and expertise from various fields. It also encourages information sharing and the development of global strategies to improve the quality of life for amyloidosis patients.

Sixteen Amyloidosis Alliance members are involved in the creation, dissemination, and promotion of the project, including Austria, France, Australia, Italy, Belgium, Ireland, Brazil, Mexico, Canada, New Zealand, Colombia, the Netherlands, the United States, the United Kingdom, Spain, and Sweden.

A Scientific Council to guide and Structure the Study

AMYlife is supported by a scientific council of world-renowned experts in amyloidosis. This group plays an essential role in supervising study methodologies, the diversity of amyloidosis types and their treatments, data validity, and the dissemination of results to the medical and scientific community. The council ensures that the study meets the highest ethical and scientific standards, ensuring solid and shareable conclusions.

A Rigorous Methodology

AMYlife’s methodology is centered on detailed data collection to provide a clear understanding of the life pathways and needs of patients with amyloidosis. Through standardized questionnaires and in-depth individual and group interviews, the study gathers information on patients’ personal experiences, symptoms, daily challenges, and the treatments and support received.

The collected data is entirely anonymous, ensuring that no respondent is required to share any personal information.

All this information will contribute to the creation of a white paper that will support advocacy for improved diagnosis and management of patients with amyloidosis..