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
Disease Specific Resources
Cardiomyopathy
- Cardiomyopathy Association
- Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C) Registry
- Hypertrophic Cardiomyopathy Association (HCMA)
- Children's Cardiomyopathy Association
Arrhythmia
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
Virtual ICD Support Group
Grief and Loss Support Resources
Psychologist finder
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
Stroke
Thoracic Aortic Disease
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
Diet and Lifestyle