Resources & Support

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General Resources

Resources to access health insurance
Accessing medical records
SDY Advocacy Organizations
Medical resources
Find a general cardiologist
Crisis Intervention and Mental Health Resources

988 Suicide Lifeline

Call or text 988 to speak with a caring crisis counselor

Languages: ASL, English, Spanish | Hours: 24/7

Mental Health Association of San Francisco

Call or text 855-600-9276 Non-crisis emotional support phone and chat line

Languages: English, Spanish | Hours: 24/7​

Carson’s Village

Supports individuals who suddenly lost a loved one with: making burial arrangements, a timeline of events, resource library, live support, a family web page, and more.

 


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
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

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

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