On January 28, 2020, the Family Heart Foundation and some of our amazing community members and leaders, who are FH Advocates for Awareness, will go to Capitol Hill to ask our elected representatives for their continued support in prioritizing familial hypercholesterolemia (FH) as a public health concern and to fund FH research.

Significant Milestones on Capitol Hill

the Family Heart Foundation has held a Capitol Hill Day with our volunteer FH Advocates for Awareness for the last 4 years. Thanks to the relentless efforts of our FH Advocates from across the United States, the Family Heart Foundation has made significant progress in our goal to raise awareness among policy makers about the silent public health crisis posed by Familial Hypercholesterolemia and the opportunity to prevent early cardiovascular disease with early diagnosis and proactive treatment of this common genetic condition.

We are proud to announce that Congress recognized the public health impact early identification of FH and intervention can make, and called on the Centers for Disease Control and Prevention (CDC) to raise awareness of FH in 2020. For the first time ever, FH made it into the Federal budget -- with support for the CDC’s awareness programs -- as a result of our efforts!

We hope this support will grow over time in order to adequately address the magnitude of the challenge posed by undiagnosed and undertreated FH.

Prioritizing FH as a Public Health Concern

In 2020, the Family Heart Foundation will build upon our work initiating a Global Call to Action on FH, and highlight key recommendations for addressing the significants gaps in care for the worldwide FH population, starting here in the United States with our Capitol Hill Day on January 28. Specifically:

Awareness

• Awareness should be enhanced regarding the importance of severe hypercholesterolemia and FH as a global public health issue; awareness should be raised in a broad range with the general public, educational institutions (both public and medical), the general medical community, and healthcare delivery systems.

Registries

• Fund national and international FH registries for research to quantify current practices and identify the gaps between guidelines and health care delivery, to publish outcome metrics for monitoring and standardizing care, identify areas for future resource deployment, dissemination and defining best practices, as well as facilitating FH awareness and screening.

Research

• Conduct basic science, genetic, epidemiological, clinical, and implementation science research to improve FH care.

Join Our Advocacy Efforts

Your participation will change what is possible for families living with FH.  We need your voice and your involvement.  Join our advocacy efforts by emailing info@thefhfoundation.org or sign up for our newsletter to stay informed!

Editor's Note

In addition to the Family Heart Foundation blog, more information on the global call to action can be found in this blog by the Center for Disease Control and Prevention.