Who are We?

Mission

The FH Foundation is a patient-centered nonprofit organization dedicated to research, advocacy, and education of familial hypercholesterolemia (FH). Our mission is to raise awareness of FH in order to increase 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.

The FH Foundation is the result of the team effort of patients and healthcare practitioners who have joined their knowledge and passion for helping others in changing the status quo for FH. We are honored to have key FH opinion leaders, both from the U.S. and international arena, sharing their expertise and research insight with the FH Foundation. Our success is rooted in collaboration, innovation, and commitment. With the help of a dedicated group of physicians and nurse practitioners, professional organizations, governmental representatives, and volunteers, The FH Foundation takes pride in its forward-thinking and versatile approach to making a real change in the world of FH.

Programs and Initiatives

CASCADE FH® Registry

To address gaps in familial hypercholesterolemia (FH) diagnosis and treatment, the FH Foundation has launched a national FH patient registry, the CASCADE FH Registry is designed to collect comprehensive data on individuals with confirmed or suspected FH on a longitudinal basis. The CASCADE FH Registry will serve as a key instrument to support health service planning, increase knowledge on the disorder and pool data for epidemiological, clinical and outcomes research, as well as for surveillance of therapy effectiveness.
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FIND FH®

FIND FH™ is a comprehensive initiative that utilizes advanced machine learning, natural language processing, and data mining techniques to identify individuals with FH on a national scale.
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FH Global Summit™

The FH Global Summit is an annual event dedicated to the science and treatment of familial hypercholesterolemia (FH). It is a global gathering of medical experts from every continent, patient advocacy organizations, health care providers, and individuals with FH. The two-day event features presentations and robust conversations that provide a platform to share insights and practices for improved awareness, diagnosis and treatment of FH.
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FH Awareness Day

The FH Awareness Campaign is the only annual international health awareness and educational campaign aimed to raise awareness of FH, bringing worldwide attention to its diagnosis and treatment throughout the month of September. As part of the campaign’s development, the FH Foundation has established National FH Awareness Day on September 24th, which is now strengthened by multiple state proclamations and recognized on a global scale.
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FH Patient Speakers Bureau

The goal of the FH Patient Speakers Bureau is to raise health professional and public awareness of FH by providing vital educational outreach on this vastly under-diagnosed and untreated disorder.

The FH Foundation identifies appropriate volunteers who have been diagnosed with FH (HeFH and/or HoFH) to receive training as FH Advocates and join the FH Patient Speakers Bureau. Participants have the opportunity to learn more about the disorder and how to effectively tell their stories to healthcare professionals and lay audiences alike. The trained patient speakers will accompany FH specialists to participate in local, regional, and national events organized by the FH Foundation. Additionally, these same spokespeople will educate their communities and local media regarding the importance of early diagnosis and proactive treatment of FH.

Grand Rounds & Family Forum

The FH Grand Rounds & Family Forums programs raise awareness of familial hypercholesterolemia (FH) in the medical field and potential patient populations. These powerful educational events aim to create an understanding among health care professionals and patients that FH is a distinct disorder. Our goal is to dramatically increase the frequency of early detection and encourage systematic cascade screening of this life-threatening genetic condition. These separate programs compliment one another and occur simultaneously around the United States at key academic institutes, integrated delivery networks, and community hospitals.

HoFH Community

The HoFH Community takes a multi-faceted approach focused on outreach, support, education, and advocacy issues within the HoFH patient population. This program focuses on building a community of individuals with HoFH by giving them a platform to share their collective voice to address important messages about screening, early detection, and treatment of FH, while providing the tools to mobilize for change.
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The FH Foundation (EIN 45-4597425) is a 501(c)3 public charity. When collaborating with outside organizations to perform activities directly related to programs through contracts, grants, or sub-grantee agreements, if the FH Foundation has a duty to pay a share of the overhead, administrative, and indirect costs incurred in the performing of those activities. To that end, the FH Foundation will pay up to 10% of the contract budget toward overhead, administrative, and indirect costs to the partner, grantee, or sub-grantee.

Who Are We?