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Mission Statement

The mission of the Sarcomeric Human Cardiomyopathy Registry (SHaRe) is to build a community of cardiovascular geneticists and research-based cardiologists who have in common a profound dedication to helping patients with heritable heart disease.

By collaboratively expanding the knowledge base, SHaRe will generate fresh insights and research initiatives with the ultimate goal of supporting the development of novel therapies where none exist today

Patients and their families will play an active and critical role in this community, through participation in research, advancing patient advocacy, and increasing community awareness. This partnership is crucial in improving the science and shedding light on the mystery surrounding inherited cardiomyopathies. Together, we will shed light where before there were many shadows.

Thank you to everyone who came out and made this event such a success!

On November 1, 2014, the SHaRe Cardiomyopathy Registry put on a free educational cardiomyopathy conference at Brigham & Women's Hospital in Boston, MA. World-renowned cardiomyopathy experts gave talks on everything from psycho-social aspects of living with cardiomyopathy, to a hopeful future of new and emerging treatments for the disease. Patients, friends and family were able to ask questions and meet with other families living with HCM and DCM.

If you would like to be notified of future conferences, please subscribe to our newsletter by clicking here.

Please find useful resources from the event below, including speaker slides, photos from the event, and a video of the conference.

SHaRe Vision

SHaRe's vision is to create hope for the future of those diagnosed with heritable forms of cardiomyopathy through education and connecting patients to research and research to patients.

View our full brochure here.

Beyond the hospital

The physicians within SHaRe know that specialized healthcare goes beyond the people you work with at the hospital. True healthcare is a team approach involving the patient and their family, their community, researchers, pharmaceuticals, and their team of doctors. It’s a complete picture of a complicated issue. It’s the way healthcare should work and it’s the way the SHaRe investigators are determined to make it work.

Community insights

Through family histories, clinical characteristics, imaging and laboratory data, we will gain insights into genetic and environmental contributions to cardiomyopathy.

Further understanding

SHaRe aims to advance the understanding of Hypertrophic and Dilated Cardiomyopathy. By harmonizing and pooling detailed, longitudinal genetic and clinical data from experienced investigators across many centers of excellence, this registry will not only be larger, but also better than what has come before.

Better predict

Better understanding clinical predictors and outcomes will allow us to test current wisdom and to generate more accurate predictors of risk and disease progression. We will begin to overcome historic limitations, critically re-defining phenotype and modifiers of outcome in sarcomeric cardiomyopathies.

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