The Genetic Cardiomyopathy Awareness Campaign was launched in the U.S. in early 2023 by eight U.S.-based cardiomyopathy patient groups to raise awareness about the need for genetic testing for cardiomyopathy patients and family members.
The purpose of this campaign is to raise awareness and to get more cardiomyopathy patients and family members genetically tested, which will help save lives and advance genetic research and therapies.
Did You Know?
Approximately half of all patients diagnosed with cardiomyopathy in the U.S. have some type of genetic cause, while only about one percent of cardiomyopathy patients get genetic testing for their cardiomyopathy.
How does this impact patients and their family members?
Many Patients are not getting the proper treatment to treat their disease and have the potential risk of sudden death.
Many Family Members are not getting properly screened, diagnosed and treated for cardiomyopathy until the disease has greatly advanced and they, too, may be at risk of sudden death.
How does this impact cardiomyopathy genetic researchers and therapy development companies?
Cardiomyopathy Researchers need a large number of genetically tested patients and family members for meaningful study results, since cardiomyopathies (especially DCM) have so many potential gene variants involved.
Genetic Researchers and Biopharma Companies require a large number of genetically tested cardiomyopathy patients and family members in their research studies and clinical trials since most of their potential therapies target a specific type of gene mutation.
Without access to adequate numbers of clinical trial candidates, funding for research and development of additional therapies for cardiomyopathy will become limited, slowing the medical advancement for cardiomyopathy.