Cardiomyopathy Happenings 

Cardiomyopathy News and Events

Events 

11th Annual International SADS Foundation Conference, October 26-28, 2018, Ann Arbor, MI

Affairs of the Heart: Living with Hypertrophic Cardiomyopathy, March 30, 2019 New Haven, CT. Registration to begin in December.

Affairs of the Heart: Living with Hypertrophic Cardiomyopathy, June 15, Durham, NC. Registration to begin in April 2019.

Living with Cardiomyopathy: A Family Conference, October 2019 (Date TBD) Chicago, IL. More details to follow


news

Children with heart failure from dilated cardiomyopathy are seeing a dramatic improvement in outcomes in recent years, Science Daily, February 5, 2018

Hypertrophic cardiomyopathy: Who has an inherited risk? Harvard Health Publications, August 2016

Sudden Death in Hypertrophic Cardiomyopathy Rarely Associated with Exercise, ESC August 28, 2016

MyoKardia Publishes Article in Science Demonstrating That MYK-461 Prevents and Reverses Disease in Genetic Mouse Models of Hypertrophic Cardiomyopathy, NASDAQ Global New Wire, February 4. 2016

Why Should Cardiologists Consider Genetic Testing for HCMJACC: Heart Failure, 18 September 2014

Molecular Cause of Heart Condition Identified by ResearchersStanford Medicine News Center, June 18, 2015

SHaRe: advancing the goal of effective treatment for cardiomyopathy, European Heart JournalCardioPulse, Volume 36, Issue 19

Protein Structure Holds Key to Heart Muscle Disease, November 29, 2014 

Sanofi and MyoKardia Announce Groundbreaking Collaboration to Develop Targeted Therapies for Patients with Genetic Heart Disease, September 17, 2014

Stanford patient on having her genome sequenced: "This is the right thing to do for our family." Cardiovascular Medicine, Stanford News - July 8, 2014

New pill-sized pacemaker implanted in heart of UK patient, The Guardian (UK), June 9, 2014

MyoKardia Announces Launch of SHaRe Patient Registry for Genetic Heart Disease in Collaboration with World-Leading Cardiovascular Patient Care Centers, Business Wire, May 14, 2014

 


ANNOUNCEMENTS

The SHaRe Cardiomyopathy Registry is pleased to welcome our two newest Principle Investigators, Dr. John Lynn Jeffries and Dr. James Ware. Dr. Jeffries is Director of the Advanced Heart Failure and Cardiomyopathy Services at Cincinnati Children's Hospital Medical Center.  Dr. Ware is Clinical Senior Lecturer in Genomic Medicine at Imperial College London and Consultant Cardiologist at Royal Bromptom and Harefield Hospitals. For additional information on Dr. Jeffries and Dr. Ware and our other Principle Investigators click here.

SHaRe is now on YouTube! Subscribe here for videos on cardiomyopathy treatment and research.

Follow us on Twitter: @SHaRe_Registry | Like us on Facebook: https://www.facebook.com/TheShareRegistry

Listen to podcast on Patient Empowered Radio, where patient Wendy Borsari discusses SHaRe and the need for a Cardiomyopathy Registry: Click here to listen!

Check back here for more upcoming announcements on SHaRe, HCM and DCM