New US Initiative Aims to Transform Early Diagnosis of Rare Heart Disease

A new three-year initiative aims to improve early diagnosis and treatment for patients with ATTR-CM, a rare but serious heart condition. Led by the American Heart Association, the programme brings together 10 healthcare teams to develop better care pathways across the US.

The project focuses on transthyretin amyloid cardiomyopathy (ATTR-CM), a disease often detected too late for current therapies to work effectively. Early recognition is key, as timely diagnosis helps patients access treatments that can slow progression and improve quality of life.

The initiative, backed by Alnylam Pharmaceuticals, involves multidisciplinary teams working to refine every stage of patient care. From initial diagnosis and specialist referrals to ongoing treatment and follow-up, the goal is to create clear, replicable models that other centres can adopt. Dr. Mat Maurer, a volunteer advisor for the American Heart Association's ATTR Amyloidosis Strategic Advisory Group, supports the effort. Dr. Sameer Bansilal, a cardiologist and vice president at Alnylam, also highlights the need for better-coordinated care as awareness of ATTR-CM grows and new therapies emerge. Despite advances, many healthcare centres still struggle to build and maintain the specialist teams needed for effective ATTR-CM management. The collaborative aims to address these gaps by sharing best practices and streamlining care processes.

The programme will run for three years, with teams testing and refining care models to ensure faster, more accurate diagnoses and smoother treatment pathways. If successful, the approach could set a new standard for ATTR-CM management, helping more patients receive the right care at the right time.