Research & Advocacy
As a patient or caregiver you can play an important role by sharing your perspectives and experiences to help us shape research and address the urgent, unmet medical needs of amyloidosis patients.
At ARC we are committed to understanding the true challenges patients face and what matters most to them.
ARC Surveys and studies are conducted throughout the year with the goal of understanding the experiences of patients and caregivers. The purpose of the surveys can vary from gaining perspectives on the journey to diagnosis to clinical experiences, evaluating the benefit versus risk that patients are willing to take with treatments, and other insights.
Focus Groups & Patient Panels can provide you with a unique opportunity to give input into shaping research. These forums may review planned research or assess the value of different types of treatments through the eyes of patients. This provides important insights, and can lead to improvements in the research that is being done.
Advocacy is a critical function of our work to improve and extend the lives of those with amyloidosis, and we need your help. We’d love to connect with you if you’re a patient or caregiver willing to be a subject of one of our patient story videos, speak at the Amyloidosis Forum or other amyloidosis events, or help raise awareness about these devastating diseases.
If you are willing to participate in our research initiatives, including patient panels, surveys, or other research, please let us know by completing the form below:
Participate in Research & Advocacy
Participate in a Clinical Trial (MAP)
Clinical trials and research studies are critically important and necessary to develop new amyloidosis treatments and better understand the disease. The more people who participate, the faster we can find the answers we need.
Learn about our amyloidosis clinical trial finder tool and read more information about MAP:
