the Family Heart Foundation Spearheads ICD-10 Code for Familial Hypercholesterolemia

September 2013 marked the Family Heart Foundation’s first Annual FH Summit, successfully gathering over 100 experts from around the world to meet in Baltimore, MD for the sole purpose of advancing the science and treatment of Familial Hypercholesterolemia (FH). FH is a potentially lethal disorder affecting at least 1 in 500 people, yet is recognized less than 10% of the time. Out of that meeting came the “call to action” that distinct ICD-10 codes for FH were vital in increasing the awareness and detection of FH and improving the care for individuals with FH and their families.

After a coordinated effort between the Family Heart Foundation and the National Lipid Association (NLA), an application for specific ICD-10 codes for heterozygous and homozygous FH was filed with the National Center for Health Statistics (NCHS) on January 16, 2014.  The proposal will be reviewed at their March meeting and if approved, would go into effect in October 2015. the Family Heart Foundation (FHF) is grateful to the NLA for their contribution to this initiative.  The FHF also encourages doctors and patients alike to contact the NCHS to voice your support for this petition. Success here will lead to far greater awareness of FH and potentially help save countless lives. For more information on how you can help, please contact the FHF at

Katherine Wilemon speaks about ICD-10 code for Familial Hypercholesterolemia from FHFoundation on Vimeo.

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