Advocacy And Support

Reaching out to an advocacy or support group can help you feel connected and stay up-to-date with the latest advances in inherited heart disease. The following groups have offered to be resources for you.

The FH Foundation

The FH Foundation is a patient-centered nonprofit organization dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). Our mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds.

HCMA

The HCMA is the preeminent organization improving the lives of those with hypertrophic cardiomyopathy (HCM) preventing untimely deaths and advancing global understanding. Founded in 1996, we are committed to providing support, education, advocacy and advancing research, understanding and care to those with HCM. This website will provide information, support options and member services.

CCF

The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on all forms of pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for causes and cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.

SADS Foundation

To save the lives and support the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

Loeys-Dietz Syndrome Foundation

The Loeys-Dietz Syndrome Foundation (LDSF) is a non-profit organization based in Baltimore, Maryland. The Foundation is dedicated to encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities in order to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome.

The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders.

The National Lipid Association

The Foundation supports patient and clinician educational, research and community outreach activities that enhance and support the initiatives of the National Lipid Association in its efforts to reduce cardiovascular events and deaths related to abnormalities of cholesterol metabolism.

The John Ritter Foundation

The John Ritter Foundation is dedicated to promoting knowledge of aortic aneurysm and dissection through research and education, and providing support to patients and families affected by aortic disease.

Brugada Drugs

BrugadaDrugs.org is a non-profit initiative developed by physicians from the University of Amsterdam Academic Medical Center, Department of Cardiology, in collaboration with a panel of world-renowned experts on Brugada syndrome as an aid to physicians who treat patients with Brugada syndrome and as an aid to patients with Brugada syndrome and their families with the goal to provide free, worldwide accessible and up-to-date information on safe drug use in Brugada syndrome.

Canadian Association of Genetic Counsellors

CAGC can provide information about the benefits of genetic counselling and help you find a local genetics clinic to access a genetic counsellor in Canada.

Global Genes

Global Genes is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.