PATIENT ADVOCACY ORGANIZATIONS FOCUSED SPECIFICALLY ON IMPROVING LIFE FOR PATIENTS WHO ARE LIVING WITH CARDIOMYOPATHIES
Hypertrophic Cardiomyopathy Association – U.S. patient advocacy organization focusing on adults and children with HCM and similar conditions.
Children’s Cardiomyopathy Foundation – U.S. patient advocacy organization focusing particularly on children with all types of cardiomyopathies, including HCM.
The Heart Dream Foundation – Dutch patient advocacy organization focusing particularly on children with all types of cardiomyopathies, including HCM.
Gilead – The Israeli Hypertrophic Cardiomyopathy Association – Israeli patient advocacy organization focusing on adults and children with HCM and related conditions.
Cardiomyopathy Association of Australia, Ltd.-Australian patient advocacy organization focusing on adults and children with all kinds of cardiomyopathies.
PATIENT ADVOCACY ORGANIZATIONS FOCUSED SPECIFICALLY ON IMPROVING LIFE FOR PATIENTS WHO ARE LIVING WITH SIMILAR CONDITIONS
SADS Foundation – U.S. patient advocacy organization focusing on adults and children who are genetically predisposed to sudden death due to heart rhythm abnormalities such as Long QT Syndrome, Brugada Syndrome, Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) also called Arrhythmogenic Right Ventricular Dysplasia (ARVD), and Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT).
Mended Hearts U.S. organization dedicated to improving the quality of life for heart patients and their families through ongoing peer-to-peer support.
PATIENT ADVOCACY ORGANIZATIONS FOCUSED ON RELATED ISSUES
American Foundation for Cardiomyopathy: A U.S. organization focusing on awareness of cardiomyopathy and sudden death prevention, including CPR training and placing AEDs in public places.
Parent Heart Watch – US organization focused on preventing sudden cardiac arrest in children.
Racing Hearts – U.S. (Northern California) organization dedicated to increasing awareness of and improve access to automated external defibrillators (AEDs).
Sudden Cardiac Arrest Foundation – U.S. organization devoted to increasing public awareness and prevention of sudden cardiac arrest.
Sudden Cardiac Arrest Association – U.S. organization devoted to increasing public awareness and preventing sudden cardiac arrest.
ICD Support Group – U.S. based website with active discussion message boards devoted to issues relating to implantable cardiac defibrillators. A must for people with ICDs and for those considering implantation.
OTHER HELPFUL RESOURCES
HCMcare.com – A great new informational resource for HCM patients. Also downloadable as an app for both Apple and Android systems.
Glossary – Here is a wonderful alphabetical glossary of terms commonly used when talking about cardiomyopathy. The glossary can be found by scrolling all the way to the bottom of the linked page. Some of the spellings may be a bit unfamiliar since they are British. The glossary was compiled by Cardiomyopathy UK.
Fitness Program Specifically Designed for HCM Patients – This fitness and stress reduction program was designed for HCM patients of all fitness levels by Dr. Harry Rakowski and the staff at the Peter Munk Cardiac Center at Toronto General Hospital in Toronto, Ontario, Canada.
Sarcomeric Human Cardiomyopathy Registry (SHaRe) – A community of cardiovascular geneticists and research-based cardiologists who collaborate on new research initiatives to help patients with genetic heart diseases and to develop new therapies to treat genetic heart disease. SHaRe regularly sponsors meetings and educational symposiums related to living with cardiomyopathy. Many helpful videos and other presentations from past programs can be found on their website.
Information about Post-Mortem Genetic Testing from the National Society of Genetic Counselors including detailed information about samples to be taken from someone who dies of suspected sudden cardiac arrest. This is a very unpleasant and uncomfortable topic, especially following an unexpected death of a young person. However, such information can be key to identifying other family members at risk. The genetic information must be preserved while it is still possible in order to protect any relatives who may also be at risk.
NOTE: If you know of or represent a similar organization that you do not see listed above, or you are aware of a helpful resource, please email us at Contact@HCMBeat.com and let us know!