Katherine Wilemon (United States of America)

The FH Foundation The FH Foundation
Katherine Wilemon is the Founder & CEO of The FH Foundation®, a leading research and advocacy non-profit organization focused on preventing heart disease by driving scientific understanding and evidence-based care of familial hypercholesterolemia (FH), a common, but vastly underdiagnosed, genetic disorder. She established the FH Foundation in response to her own heart attack at the age of 38 and the growing realization that 90% of the individuals and families who carried the FH genetic mutation had never been diagnosed and were not receiving life-saving care. Katherine is a recognized international leader in FH research, leading or co-leading several well received clinical guidelines, policy papers, and roundtables, including convening a Global Call to Action to prioritize FH as a public health concern, playing key roles in the NHLBI implementation science workshop on FH and the Genomic Public Health Action Collaborative, and publishing a genetic testing statement for FH. The FH Foundation has developed innovative partnerships to accelerate the adoption of evidence-based diagnosis and treatment for individuals with FH, by harnessing the power of artificial intelligence, genomics and patient-driven research. The FH Foundation launched an ambitious big data initiative, FIND FH®, to identify the 1.3 million individuals with FH in the U.S., established the largest longitudinal FH clinical registry, and applied and received a national diagnosis code for FH. Her contributions to science have led to the publication and dissemination of over 30 peer-reviewed manuscripts. The FH Foundation’s annual FH Global Summit TM convenes leaders in FH research and care from around the world to disseminate best practices and insights. In addition, the FH Foundation established FH Awareness Day (September 24), now celebrated worldwide. In 2020, the FH Foundation created programs to address the barriers for optimal care for individuals living with Lipoprotein(a). The FH Foundation works in partnership with patients, clinicians, scientists, and all participants in the healthcare ecosystem to develop innovative solutions that will overcome barriers to diagnosis, treatment and access.