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 hATTR Survey
ARC is looking for hATTR patients and caregivers to take part in a survey about your views on hereditary ATTR (hATTR) treatment. The information we collect from the surveys will enable us to make a strong case to regulatory bodies and companies who are researching drugs about the value of new treatments to the hATTR community. Your participation will play an important role in shaping future treatments for hATTR.
We have created two surveys, one for patients and one for caregivers: