Rare, Underserved and Underdiagnosed
Amyloidosis is a disorder caused by proteins that possess abnormal conformational features leading them to aggregate and infiltrate tissues in the form of amyloid fibrils. Systemic amyloidosis is a disease that can damage the heart, kidneys, liver, soft tissue and nervous system, resulting in multi-organ failure and death.
Awareness and understanding of these diseases is the first step to delivering better outcomes for patients.
Transform the Research Landscape
The Amyloidosis Research Consortium has been established to address critical needs in clinical trials and related research for the underserved group of systemic amyloid diseases.
ARC is addressing the urgent, unmet medical needs in amyloidosis.
Optimize, Collaborate and Share
Our Collaborative Network speeds the delivery of new and better therapies to patients with amyloidosis. This network consists of a highly collaborative team of core amyloidosis centers, devoted to all the types of systemic amyloidosis.
Find out more about our Clinical Trials Network and Core Member Centers.
Deliver Actionable Solutions for Patients
As a patient led organization ARC has firsthand knowledge of how amyloidosis affects our community. We engage scientists, policymakers and government regulators as partners in our efforts to breakdown barriers to research and drug development.
Scientific progress is maximized when supported by sound public policy and advocacy.
Take Action; Participate in our International Survey
If you or a loved one has ever had a diagnosis of amyloidosis with heart involvement, please take a few moments to fill out this important survey. Martha Grogan, MD, a cardiologist at the Mayo Clinic and the Amyloidosis Research Consortium designed this survey in order to study the barriers that patients experience with pursuing a diagnosis. These surveys will also be looking at geographical differences in patient experiences. The results will be used to educate, engage and inform medical professionals about ways to diagnose patients earlier. You can play an important role in helping us educate physicians.
The surveys are available in English, Dutch, French, German, Italian and Spanish Please click on the survey link below to find your language