FH Community in Action

the Family Heart Foundation is a true partnership of individuals and families impacted by FH, and the healthcare professionals who diagnose and treat FH. Together, we are raising awareness of FH, driving improved diagnosis, making sure individuals know their treatment options and opportunities for clinical trial research, and mobilizing to impact public policy. This FH Global Summit gathering every year is a great example of the power of the FH Community. It is the embodiment of the Family Heart Foundation’s approach to everything we do, bringing together data, medical expertise, and the patient perspective to make meaningful change in the lives of people with FH.

The reach and impact of the Family Heart Foundation’s Community in Action program can be felt all year long.

Every day, the Family Heart Foundation answers questions from individuals with FH and their family members.

People call, email, and post on social media asking:

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Where can I find an FH Specialist near me?
What are my treatment options?
Is cholesterol really bad for me?
Isn’t it the statins that will kill me?
What do experts say about what my LDL-C level should be?
Is Lipoprotein Apheresis available near me for my toddler who we just discovered has Homozygous FH?
My insurance plan just denied my PCSK9 inhibitor prescription, can you help me make my case to my insurance plan and my employer for this treatment?
My family members don’t want to face this FH diagnosis. What can I do?
The doctor says it’s time to put my child on a statin, please help me feel good about this important step in our family’s FH journey.

the Family Heart Foundation is there for these individuals every day, connecting them with experts, educational materials, research opportunities, and most importantly, with each other for support. We know that people who are connected with the Family Heart Foundation understand FH better and are more aware of their treatment options. Our goal is that more informed and empowered individuals will achieve better outcomes for themselves, their families, and for the FH Community as a whole.

Over the past 7 years, the FH Community in Action Program has built an incredible network of trained volunteers—FH Advocates for Awareness—across the United States. We now have 115 FH Advocates in 37 States. These amazing individuals have stepped up to share their stories to raise awareness of FH, to support their peers who are newly diagnosed, and to make sure the Family Heart Foundation continues to prioritize what is most important to the people we serve—individuals with FH and their families.

We are a “patient-driven” organization. Founded and led by people with FH, everything we do is driven by our understanding of the needs and priorities of individuals with FH. FH Advocates inform that understanding. Their experiences have helped to illustrate the impact FH has on people’s lives, demonstrated the need for additional treatment options to fight FH, and made palpable the frustration of not being able to access new treatments specifically developed and approved for FH.

Help us build the FH Community

Every day, the Family Heart Foundation answers questions from individuals with FH and their family members.

People call, email, and post on social media asking:

Connect your patients or your family members to the Family Heart Foundation and the resources we offer.
Nominate an FH Advocate for Awareness.
Share your own story with us so we can raise awareness of FH.
Invite the Family Heart Foundation to present at a medical conference, at your institution, or in your local community.