Resources
Find your care
Our team provides treatment and counseling for your whole family. Call
to learn more about the Cardiovascular Genetics Clinic.Resources for Support
- Cardiovascular genetics Taking Heredity to Heart - The role of genetics in cardiovascular disease.
- has compiled a list of advocacy organizations that support rare diseases.
- is a federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
- provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
- 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.
- 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.
- 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? (
What does DNA do? ( )
What is a genetic counselor? ( )
What is genetic testing? ( )
General information
American Heart Association (
National Heart, Lung, and Blood Institute ( )
National Society of Genetic Counselors ( )
About Genetic Counselors ( ) - Learn who genetic counselors are and what we do.
Gene Reviews ( ) - Gene Reviews offers a summary of clinical information for various inherited conditions.
Genetics Home Reference ( ) - 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)
- has compiled a list of advocacy organizations that support rare diseases.
- is a federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.
- provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.
- 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.
- 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.
- 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 (
) - 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)