Advocates for Awareness Program

The Advocates for Awareness program is part of an FH educational campaign that focuses on community outreach and strives to raise awareness of this vastly underdiagnosed and untreated disease. Advocates are individuals with FH who have been trained to share their stories and important messages about screening, early detection and treatment of familial hypercholesterolemia.getinvolved-button_advocacy

FH Awareness Program

The FH Foundation is a small nonprofit with big ambitions. We are the only organization in the US exclusively dedicated to raising awareness of FH. In less than two years we have launched three major initiatives. Our FH Advocates for Awareness program trains individuals with FH to tell their compelling stories to larger audiences and educate their communities about the staggering reality of FH. Our inaugural FH Summit: Awareness to Action brings together FH stakeholders from across the globe to fill the gaps in FH care and share best practices. Our CASCADE FH Registry is a nationwide database of families with FH enabling research into FH and improved care for those affected by this life-threatening disease. Your support helps us fulfill our mission and save lives.


In 2013 the FH Foundation is launching the only active Familial Hypercholesterolemia Registry in the United States. The goal of this confidential, HIPAA-compliant project is to collect comprehensive information on families affected by FH to identify FH disease patterns, improve the rate of diagnosis, and enhance the care that individuals with FH receive. CASCADE FH will enable research and insight into this severely underdiagnosed and undertreated disease. Its innovative model combines patient-entered and physician-entered data, collected on a continuous, long-term basis. The registry enables patients and their caregivers to directly report on their quality of life, satisfaction with and effectiveness of care and treatment. This unique design empowers patients to better manage their own health outcomes. The result will be increased knowledge and understanding of the disease to improve the care and survival of those with FH.

In 2012 the FH Foundation launched the first National FH Awareness Day in the month of September (Cholesterol Awareness Month). This year, National FH Awareness Day is taking place on September 24th. On this day we like to take the opportunity to reach more people in the United States and show them the shocking statistics surrounding FH. Familial Hypercholesterolemia is a common disease (at least every 1 in 500 people has it) but it is an uncommon diagnosis. Less than 10% of people have been diagnosed. Through outreach on our website and various media outlets, we strive to put forward FH in the public eye. Early diagnosis and proactive treatment of FH are essential to a longer, healthier life. Help us spread the word and save lives.


We want to hear from you! Help us show the face of Familial Hypercholesterolemia. People with FH are of all ages, genders, and ethnic backgrounds. Because FH causes high cholesterol levels from birth, it leads to heart disease and heart attacks at an early age (before age 50 in men and before age 60 in women). Often people with FH get turned away by the ER because they “don’t look like someone who has progressive heart disease”. Tell us your story and help us show the reality of living with Familial Hypercholesterolemia.

The FH Foundation Headquarter Offices is looking for volunteers to work on various short-term office projects throughout the year. We are located in South Pasadena, California. A great resource for High School Seniors trying to complete their community service hours, college students interested in gaining experience in a non-profit environment or those in transition who’d like to assist with a great cause.

If you have an interest in being added to our database for consideration, please send us an email along with your resume and contact information to

The FH Foundation is committed to raising awareness of familial hypercholesterolemia internationally. Together, with advocacy organizations within specific countries, our joint goal is to share knowledge, resources and ideas to advance the diagnosis of FH and advocate for adequate care of this potentially deadly but treatable disorder.

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The FH Foundation gratefully acknowledges the generous support of our sponsors and partners. With the help of government, professional organizations and industry, we have made incredible progress in the field of FH. We owe the success of all our major initiatives to this dedicated group. Join us today in helping individuals with FH live longer, healthier lives.button_sponsors

Aegerion Pharmaceuticals | Partner