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 very interested in better understanding the challenges patients face and what matters most to them.

Patient Panels & Focus Groups

As a patient living with amyloidosis, you are an expert in your disease. Participating in a focus group or patient panel provides 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.

Focus and patient panels may either be held as an in-person meeting or virtually, so you can take part through a video conference.

If you are interested in participating in a patient panel or focus group:
Submit the participant contact information form

Patient and Caregiver Research Surveys

If you’re a patient or caregiver, you can help us find answers. ARC conducts patient surveys and studies throughout the year with the goal of understanding patient experiences. The purpose of the surveys can vary from gaining patient perspective on their journey to diagnosis, to evaluating the benefit versus risk that a patient is willing to take with treatments.

If you would like to be kept informed of research opportunities:
Submit the participant contact information form

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:
Read more here