Resources

Resources for Support

• Cardiovascular genetics Taking Heredity to Heart - The role of genetics in cardiovascular disease.
• The Genetic and Rare Diseases (GARD) Information Center has compiled a list of advocacy organizations that support rare diseases.
• The National Organization for Rare Disorders is a federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
• The Genetic Alliance provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions. 
• Global Genes is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections, and equipping advocates to become successful activists.
• Health Hotlines is a database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc. 
• RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
• Syndromes Without A Name (SWAN) offers support, information, and advice to families of children living with an undiagnosed syndrome.

Learn more about DNA and genetics

What is DNA? (www.youtube.com/watch?v=0_b80fHmuWw)
What does DNA do? (www.youtube.com/watch?v=gG7uCskUOrA)
What is a genetic counselor? (www.youtube.com/watch?v=GDjLazXGV0s)
What is genetic testing? (www.youtube.com/watch?v=htNK6DT69IE)

General information

American Heart Association (www.heart.org/HEARTORG/)
National Heart, Lung, and Blood Institute (www.nhlbi.nih.gov/)
National Society of Genetic Counselors (www.nsgc.org)
About Genetic Counselors (aboutgeneticcounselors.com/) - Learn who genetic counselors are and what we do.
Gene Reviews (www.ncbi.nlm.nih.gov/books/NBK1116/) - Gene Reviews offers a summary of clinical information for various inherited conditions.
Genetics Home Reference (ghr.nlm.nih.gov/) - Genetics Home Reference provides patient-friendly information on genetics, inheritance patterns, genes and the various genetic conditions associated with them.

Cardiovascular conditions

For resources on a particular condition, please see ‘Resources’ under each individual condition’s page.

Rare disease (these are all the current links on the page except the last two, which I added)

• The Genetic and Rare Diseases (GARD) Information Center has compiled a list of advocacy organizations that support rare diseases.
• The National Organization for Rare Disorders is a federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
• The Genetic Alliance provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
• Global Genes is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections, and equipping advocates to become successful activists.
• Health Hotlines is a database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc.
• RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
• Syndromes Without A Name (SWAN) offers support, information, and advice to families of children living with an undiagnosed syndrome.

Information for relatives

Directory of genetic counselors (www.nsgc.org/page/find-a-gc-search) - Use this link to search for a cardiovascular genetic counselor in your area.

UCLA Pediatric Cardiology Clinic (https://www.uclahealth.org/medical-services/pediatric-cardiology/)

UCLA Pediatric Genetics Clinic (https://www.uclahealth.org/medical-services/pediatric-genetics)