The Cardiomyopathy Collective
Industry leaders advancing precision diagnosis and care in cardiomyopathy, together.
Inspired, as always, by patients and their families.
Join the CollectiveOur Mission
To make diagnosis more precise and actionable for patients, families, and clinicians. Because precision leads to action, and action can make all the difference.
The information to improve cardiomyopathy care already exists. Our work is putting it into the hands of those who need it most.
The Challenge
Right now, people with cardiomyopathy are sitting in heart failure clinics with a one-size-fits-all diagnosis. They are not rare. They are undiagnosed.
ACC, AHA, HRS, HFSA, and ESC all recommend comprehensive diagnostic evaluation, including genetic testing.
Despite clear recommendations, genetic testing rates remain below 2% nationally.
Without diagnosis, affected family members go unidentified. Inherited disease requires family-centered care.
The Pathway
Cardiomyopathy care is not one test. It is a journey from recognition to diagnosis to treatment. Each step matters.
Cardiomyopathy hides in unexplained heart failure, arrhythmias, and family histories no one asked about. Recognition starts with knowing when to look.
Diagnosis is not one test. It is imaging, phenotyping, family history, and genetics working together. The goal is a precise, actionable diagnosis.
A diagnosis only matters if it changes care. Precision diagnosis enables the right therapy, monitoring, and support for the whole family.
What's Possible
ATTR-CM was once considered a rare disease. Prevalence estimates suggested fewer than 1 in 100,000 people were affected.
Then the field started looking. Education campaigns launched. Diagnostic pathways were built. Testing became accessible.
Today, up to 150,000 people in the U.S. are believed to have ATTR-CM. The biology did not change. Diagnosis did.
"The patients were always there. The field just wasn't looking."
The Collective
No single company can close the diagnostic gap alone. The Cardiomyopathy Collective brings together organizations who share a commitment to finding these patients and changing how cardiomyopathy is diagnosed and treated.
We work on field-level challenges that benefit all patients, not company-specific agendas.
Priorities and projects are shaped by members together.
Coordinated efforts to help clinicians recognize cardiomyopathy and understand when to test.
Building pathways that make guideline-based diagnosis accessible for every patient.
We are forming the Cardiomyopathy Collective now and inviting organizations who want to be part of changing how this disease is recognized, diagnosed, and treated.
Wednesday, March 12, 2025
12:00 PM to 1:00 PM ET
Late March 2025
Informal meetup, details to follow