Resources & Support

General Resources

Disease Specific Resources

Cardiomyopathy

• Cardiomyopathy Association

• Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C) Registry

• Hypertrophic Cardiomyopathy Association (HCMA)

• Children's Cardiomyopathy Association

Arrhythmia

• Long QT Syndrome (LQTS) Registry

• Brugada Sr Foundation

• Brugada/LQTS Drugs to avoid

Vascular

• Marfan Syndrome (MFS)

• Loeys Dietz Syndrome (LDS)

• Vascular Ehlers Danlos Syndrome (vEDS/EDSIV)

• Thoracic Aortic Aneurysm/Dissection (TAAD)

Congenital Heart Defects

• https://www.nhlbi.nih.gov/health/health-topics/topics/chd

• https://www.achaheart.org/your-heart/health-information/understanding-your-adult-congenital-heart-disease

• https://www.littlehearts.org

• http://kidswithheart.org

Cardiac Arrest Survivors 

• Life After SCA 

• Sudden Cardiac Arrest Association 

Virtual ICD Support Group

SADs ICD Support Group 

Grief and Loss Support Resources

Psychologist finder

• American Psychologist Association

• Cardiovascular Genetic Counseling Services

Grief Resources

• https://griefcounselor.org/resources/helpful-websites/

• http://www.griefwatch.com/resources.html

• http://www.nfda.org/consumer-resources/grief-support

• Local hospitals/churches often have support groups.

• Hospice providers are very knowledgeable about resources available in their communities.

Professional Medical Resources

Coronary Heart Disease

• ACC/AHA guideline on Atherosclerotic Coronary Vascular Disease (2013)

• AHA CVD Risk Calculator

Stroke

• AHA/ASA Stroke Prevention Guideline (2014)

Thoracic Aortic Disease

• ACCF/AHA/AATS/ACR/ASA/SCA/SCAI/STS/SVM Guideline on Thoracic Aortic Disease (2010)

Genetic Arrhythmias and Cardiomyopathies

• EHRA/HRS/APHRS Consensus on Inherited Primary Arrhythmia Syndromes (2013)

• ACCF/AHA Guideline on Hypertrophic Cardiomyopathy (2011)

• HFSA Guideline on Genetic Cardiomyopathy (2009)

• HRS/EHRA Consensus of Genetic Evaluation for Channelopathies and Cardiomyopathies (2011)

General Health

• US Preventative Services Task Force

Diet and Lifestyle

• American Heart Association