{"id":15928,"date":"2023-09-24T09:00:40","date_gmt":"2023-09-24T07:00:40","guid":{"rendered":"https:\/\/world-heart-federation.org\/?post_type=news&p=15928"},"modified":"2023-09-23T10:27:57","modified_gmt":"2023-09-23T08:27:57","slug":"fh-awareness-day-2023-cardiovascular-disease","status":"publish","type":"news","link":"https:\/\/world-heart-federation.org\/news\/fh-awareness-day-2023-cardiovascular-disease\/","title":{"rendered":"FH Awareness Day 2023: Shedding light on a rare cardiovascular disease"},"content":{"rendered":"

Familial hypercholesterolemia, commonly referred to as FH, is a genetically inherited condition causing raised cholesterol from birth. Untreated, lifelong exposure to elevated concentrations of low-density lipoprotein (LDL) cholesterol leads to premature heart disease and untimely deaths.\u00a0<\/span>\u00a0<\/span><\/p>\n

FH remains a severely underdiagnosed and undertreated disease that affects approximately 1 in 311 people or about 25 million individuals globally. This year, the World Heart Federation shines a spotlight on homozygous familial hypercholesterolemia (HoFH), a particularly rare and life-threatening form of FH, affecting 1 in 300,000 people, or nearly 30,000 individuals worldwide.<\/span>\u00a0<\/span><\/p>\n

Early detection and treatment are crucial in managing and preventing premature heart disease associated with FH and HoFH. If left untreated, individuals living with HoFH will experience a major cardiovascular event before 20 years of age, or sometimes even during childhood. Alarmingly, data reveal that only 10% of people living with FH receive a diagnosis. In the case of HoFH, the figure plummets to less than 5%. Evidence also suggests that individuals affected by HoFH are typically diagnosed late, on average at 12 years of age, and often receive suboptimal care.\u00a0<\/span>\u00a0<\/span><\/p>\n

HoFH is a unique condition, which necessitates not only early detection but also highly specialized care. Many individuals living with HoFH may prove unresponsive to traditional cholesterol-lowering interventions and may require novel, and often expensive, therapies. Thus, many renowned experts have advocated for the development of tailored screening and management strategies for HoFH.<\/span>\u00a0<\/span><\/p>\n

Rare cardiovascular diseases, such as HoFH, are frequently underdiagnosed and undertreated due to low levels of awareness and understanding among both healthcare professionals and the general population as well as due to the absence of systematic screening strategies. As such, the World Heart Federation (WHF) convened its inaugural <\/span>Rare Cardiovascular Diseases Forum<\/span><\/i> in May 2023, which provided a platform for researchers, policymakers, patient advocates, and leaders from both the cardiovascular health and rare diseases communities to identify priorities for action and formulate plans to address challenges related to the diagnosis, treatment, and care of individuals living with rare cardiovascular diseases, including HoFH.<\/span>\u00a0<\/span><\/p>\n

On FH Awareness Day, the World Heart Federation urges all stakeholders to:<\/span>\u00a0<\/span><\/p>\n