On November 29, 2024, the Amyloidosis Alliance officially launched AMYlife, a groundbreaking global survey designed to explore the daily challenges and needs of patients living with amyloidosis and their families. By gathering international data, this initiative aims to enhance understanding and improve care for those affected by this rare disease.
Amyloidosis: A Rare Disease with Global Impact
Amyloidosis is a complex and rare condition caused by the abnormal accumulation of proteins in tissues and organs. The diversity of its forms, coupled with disparities in healthcare systems worldwide, often leads to delayed diagnosis. These delays can significantly affect the quality of life of patients and their loved ones.
Why the AMYlife Amyloidosis Survey Matters?
AMYlife is a pivotal project seeking to illuminate the realities faced by individuals with amyloidosis. Its objectives include:
- Understanding care pathways: Identifying obstacles within various healthcare systems.
- Addressing daily challenges: Highlighting the difficulties patients face in managing symptoms, maintaining daily routines, and navigating social and psychological impacts.
- Identifying unmet needs: Addressing gaps in diagnosis access, treatment availability, and patient or family support.
- Providing global comparative data: Promoting best practices and encouraging effective care models worldwide.
- An Unprecedented International Collaboration
AMYlife brings together 16 member organizations of the Amyloidosis Alliance from countries including France, the United States, Brazil, Sweden, and many more. This collective effort is further strengthened by a scientific advisory board comprising globally renowned experts. Their involvement ensures the survey adheres to the highest ethical and scientific standards.
Data to Drive Change
The findings from AMYlife will equip policymakers, healthcare providers, and industry leaders with the tools to improve patient care in every participating country. By comparing international data, the survey will spotlight successful care models and encourage their adoption across borders.
A Patient-Centered Scientific Methodology
AMYlife’s rigorous methodology focuses on obtaining a detailed picture of patient lives through:
- Standardized questionnaires, enabling internationally comparable data collection.
- In-depth interviews, providing personal insights into patients’ daily experiences.
- Anonymized data collection, ensuring participant confidentiality and trust.
- Transforming Knowledge into Action
The AMYlife amyloidosis survey aims to transform insights into tangible outcomes. From advancing treatment options to improving diagnostic access and supporting families, the survey’s results will directly inform strategies to meet patient needs more effectively.
How to Participate in AMYlife
Patients, caregivers, and healthcare professionals can make a difference by contributing to or promoting the survey.
Join the survey
AMYlife: A Beacon of Hope for Amyloidosis Patients
Through this global effort, the Amyloidosis Alliance unites patients, families, and experts to drive progress in understanding and managing amyloidosis. Together, we can build a future where every individual affected by amyloidosis receives the care and support they need.
