Family Heart Foundation

What Family Heart Foundation does

The Family Heart Foundation is a U.S. 501(c)(3) nonprofit founded in 2011 by Katherine A. Wilemon after her own heart attack traced to familial hypercholesterolemia (FH) and elevated lipoprotein(a). The organization pursues a vertically integrated model combining patient advocacy, free at-home screening, clinician education, AI-driven patient identification, and a national research registry for FH and elevated Lp(a) — two inherited lipid disorders that together affect roughly 1 in 5 Americans but historically go undiagnosed in over 90% of FH cases. Its portfolio includes the Cholesterol Connect free at-home finger-stick screening program (lipid panel plus Lp(a), with Care Navigation follow-up), the CASCADE FH Registry (the only national FH registry in the U.S., 6,000+ participants across 40 clinical sites), and the Family Heart Database — a HIPAA-compliant dataset of cholesterol labs from more than 81 million anonymous individuals and ~500,000 Lp(a) results that powers peer-reviewed real-world evidence research.

Core technology centers on the FIND FH machine-learning model, which scans structured health records to flag probable FH patients and has been validated and deployed by large U.S. health systems (with reported precision of ~200 of 250 flagged patients confirmed as FH cases). FIND Lp(a) extends the same ML architecture to elevated lipoprotein(a). The Foundation pairs this research platform with implementation science through the Collaborative Learning Network to redesign clinical workflows inside health systems.

Revenue comes from a mix of individual donations (one-time and $24/month recurring), foundation grants (e.g., Riley and Susan Bechtel Foundation), peer-to-peer fundraising, and multi-tier corporate sponsorships from 14+ pharma and biotech partners including Amgen (flagship sponsor of Cholesterol Connect and Care Navigation), Regeneron, Merck, Lilly, Novartis, AstraZeneca, New Amsterdam Pharma, Esperion, Roche, Chiesi, CRISPR Therapeutics, Editas Medicine, and GenInCode. All patient-facing services are provided free of charge. The Foundation is governed by a board chaired by Dr. Seth J. Baum and advised by dual Scientific Advisory Boards drawn from leading U.S. and European lipid research institutions. Its research outputs include 30+ peer-reviewed publications since 2014, with the JAMA Cardiology Global Call to Action on FH (2020) and the European Heart Journal Lp(a) recurrent ASCVD study (2025) as signature outputs.

Name

Family Heart Foundation

Legal name

Family Heart Foundation

Website

https://familyheart.org

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

11–50 employees

Short description

The Family Heart Foundation is a U.S. nonprofit that runs the only national FH registry, a free at-home lipid and Lp(a) screening program, an AI-driven EHR flagging tool (FIND FH), and the Family Heart Database — serving patients, families, clinicians, and researchers focused on inherited cardiovascular lipid disorders.

Ownership category

akta.pro rank

Product category

Nonprofit Health Advocacy

NAICS

Other Individual and Family Services (624190)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Cardiometabolic RPM & Chronic Disease Management (diabetes, hypertension, CHF, obesity) (HLALAFAA)

akta.pro secondary industry

Preventive Cardiology & Lipidology (HLAKABAF)

Keywords

• Patient advocacy services
• Lipid disorder research
• Cardiovascular screening programs
• Healthcare education programs
• Nonprofit patient support

Headquarters

HQ city

Fernandina Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual donations (one-time and recurring): Online one-time donations via give.familyheart.org and recurring monthly giving program ($24/month framing). Checks accepted by mail to the Fernandina Beach, FL office. Includes Tribute and Legacy/Planned Giving and Workplace Giving through employer payroll deductions.
2. Pharmaceutical corporate sponsorships: Multi-tier sponsorships (Gold, Silver, Platinum, Bronze, Supporting) from pharma and biotech companies funding specific programs such as Cholesterol Connect, Care Navigation Center, Cascade FH Registry, Lp(a) AW(a)RE, GOAL, Family Heart Global Summit, LDL Safe Zone, LEAD Pediatrics, and Lp(a) Awareness Day. Sponsors include Amgen, Regeneron, Merck, Lilly, Novartis, AstraZeneca, New Amsterdam, Arrowhead, Esperion, Roche, Chiesi, CRISPR Therapeutics, Editas, and GenInCode.
3. Foundation and family grants: Foundation grants (e.g., Riley and Susan Bechtel Foundation supports Community Connect) and similar restricted program funding.
4. Community / peer-to-peer fundraising: Race for FH community fundraising events, Facebook Fundraisers, and Shop Family Heart merchandise store (percentage of proceeds supports the mission).

Pricing tiers

Go-to-market motion5 records

Distribution channels7 records

Marketing channels10 records

Core offering

The Family Heart Foundation provides free at-home lipid screening (total cholesterol and Lp(a)) through its Cholesterol Connect program, personalized Care Navigation support for individuals and families living with FH and elevated Lp(a), clinician-facing AI tools (FIND FH and FIND Lp(a)) that help health systems identify undiagnosed patients, and a research infrastructure built on the Family Heart Database and CASCADE FH Registry. It complements these with patient and clinician education, advocacy, awareness initiatives, and the Family Heart Global Summit convened to advance the inherited lipid disorder field.

Product overview

Family Heart Foundation delivers a portfolio of patient-facing programs and clinician-facing research assets rather than a single unified software product. At the patient-facing core sits Cholesterol Connect®, a free at-home lipid/Lp(a) screening program that pairs finger-stick testing with the free Care Navigation Center for individualized support and resource navigation. These connect upward into the Foundation's research platform: the FIND FH® (and FIND Lp(a)®) machine-learning identification tools, the CASCADE FH® Registry of more than 6,000 FH patients, the Family Heart Database® (a HIPAA-compliant national healthcare dataset with cholesterol labs from over 81 million individuals), and the Collaborative Learning Network that operationalizes findings inside large health systems. Awareness and education are delivered through the LDL Safe Zone® concept and annual campaigns including FH Awareness Day (September 24), Lp(a) Awareness Day, and the "Tackle Cholesterol™: Get into the LDL Safe Zone®" campaign with Matt Hasselbeck, complemented by the annual FH Global Summit™/Family Heart Global Summit®, the LEAD Pediatric Cholesterol Screening Initiative, GOAL, Family Screening Initiative, Community Connect, HoFH Community Gathering, and Lp(a) AW(a)RE.

Differentiator

Problem solved

Functional benefit

Brands

• Cholesterol Connect: Free at-home finger-prick LDL-C, lipid panel, and lipoprotein(a) screening program with care-navigation support for U.S. residents.
• CASCADE FH Registry
• FIND FH
• Family Heart Global Summit
• LDL Safe Zone
• Family Heart Care Navigation Center
• FH Awareness Day
• Lipoprotein(a) Awareness Day

Products and services

• Cholesterol Connect Free at-home lipid screening program that provides total cholesterol and Lp(a) testing to adults across the US, with results returned to participants along with educational resources and follow-up support. Designed for individuals and families seeking to understand their inherited cardiovascular risk without cost.
• Care Navigation Center Personalized, multilingual support service that helps individuals and families navigate an FH or elevated Lp(a) diagnosis, find specialists, understand treatment options, access insurance support, and cascade-screen family members. Available via phone, video, email, and text.
• FIND FH Proprietary machine learning model and clinician-facing tool that uses electronic health record data to identify patients likely to have Familial Hypercholesterolemia who have not yet been diagnosed, supporting health systems, clinicians, and quality improvement programs in FH case-finding.
• FIND Lp(a) Proprietary machine learning model and clinician-facing tool designed to help clinicians and health systems identify patients with elevated Lipoprotein(a) who may benefit from further evaluation and risk management, complementing the FIND FH model.
• CASCADE FH Registry Longitudinal, real-world research registry that aggregates clinical, genetic, treatment, and outcomes data on individuals living with Familial Hypercholesterolemia, supporting observational research, peer-reviewed publications, and collaboration with researchers and biopharma partners.
• Family Heart Database Proprietary data infrastructure that underpins the foundation's research, screening, and AI initiatives by integrating patient, clinician, and program data assets to power FIND FH, FIND Lp(a), and longitudinal research.
• Family Heart Global Summit Annual international summit that convenes patients, clinicians, researchers, advocacy organizations, and biopharma partners to share the latest science, clinical best practices, and community-building strategies for FH and elevated Lp(a).
• LDL Safe Zone Clinical decision framework co-developed with leading lipidologists to help clinicians set, communicate, and manage LDL cholesterol targets for patients with FH and elevated Lp(a), supporting treatment planning and patient engagement.
• Lp(a) AW(a)RE Awareness and education initiative focused on elevating understanding of elevated Lipoprotein(a) among clinicians, patients, and the general public through educational content, awareness campaigns, and partner engagement.
• GOAL Program Support program designed to help individuals living with FH or elevated Lp(a) set and pursue personal lipid-management and treatment-adherence goals through structured resources and coaching-style guidance.
• LEAD Pediatric Screening Initiative Initiative focused on early identification and screening of children for FH and elevated Lp(a), supporting pediatricians, families, and health systems in implementing childhood lipid screening and family cascade screening.
• Family Screening Initiative Program that supports cascade screening of family members after an FH diagnosis, providing education, resources, and tools to help families identify affected relatives and connect them to care.
• Community Connect Community engagement program that connects patients, families, and advocates living with FH and elevated Lp(a) through peer support, gatherings, and online community resources.
• HoFH Community Gathering Specialized community gathering for individuals and families affected by homozygous Familial Hypercholesterolemia (HoFH), offering targeted education, peer connection, and advocacy resources for this rare and severe FH sub-population.
• Tackle Cholesterol Campaign Branded awareness campaign focused on promoting cholesterol screening and lipid management, engaging patients, clinicians, and partner organizations to expand screening rates and improve lipid control.
• Collaborative Learning Network Clinician-focused peer learning network that supports shared learning, best-practice exchange, and collaboration on FH and elevated Lp(a) management among participating clinicians and health systems.

Quantifiable outcome

• FH diagnosis rate in the U.S. increased from ~1% to 20% in roughly 10 years
• +5 more outcomes

Segments7 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability1 record

Feature7 records

Partnerships

20 partnerships are on record, tiered flagship / tier-1 sponsor, core / tier-2 sponsor, mid / tier-3 sponsor, core community funder, flagship advocacy partner, flagship ambassador, core ambassador and mid clinical-trial partner.

• Amgenflagship / tier-1 sponsorStrategic or Co-development PartnerAmgen is a Gold sponsor of the Care Navigation Center and the primary supporter of Cholesterol Connect (free at-home screening) and the GOAL (Getting On Appropriate Lipid Lowering) program. Amgen also sponsors Community Engagement for Lp(a), the Lp(a) Awareness Day, and the LDL SafeZone program. Listed as a Global Call to Action sponsor alongside Sanofi/Regeneron.
• Regeneronflagship / tier-1 sponsorStrategic or Co-development PartnerRegeneron is a Silver sponsor of the Care Navigation Center and Platinum sponsor of the Family Screening Initiative. Regeneron also sponsors Community Engagement for HoFH, the HoFH Community Gathering, and is a sponsor of the Family Heart Global Summit 2026. Co-listed with Sanofi as a Global Call to Action sponsor.
• Merckcore / tier-2 sponsorStrategic or Co-development PartnerMerck is a Silver sponsor of the Care Navigation Center, a Platinum Corporate Advisory Sponsor, and a sponsor of the LDL Safe Zone and Family Heart Global Summit 2026 programs.
• Lillycore / tier-2 sponsorStrategic or Co-development PartnerLilly sponsors the Lp(a) AW(a)RE program, Community Engagement for Lp(a), Lp(a) Awareness Day, and is a sponsor of the Family Heart Global Summit 2026.
• Novartismid / tier-3 sponsorStrategic or Co-development PartnerNovartis is a sponsor of Community Engagement for Lp(a) on the Foundation's sponsors and partners page.
• AstraZenecacore / tier-2 sponsorStrategic or Co-development PartnerAstraZeneca is a Platinum Corporate Advisory Sponsor of the Family Heart Foundation.
• New Amsterdam Pharmamid / tier-3 sponsorStrategic or Co-development PartnerNew Amsterdam is a Platinum Corporate Advisory Sponsor, a Supporting sponsor of the GOAL program, and a Family Heart Global Summit 2026 sponsor.
• Arrowhead Pharmaceuticalsmid / tier-3 sponsorStrategic or Co-development PartnerArrowhead is a Bronze Corporate Advisory Sponsor and a Family Heart Global Summit 2026 sponsor.
• Esperionmid / tier-3 sponsorStrategic or Co-development PartnerEsperion is a Bronze Corporate Advisory Sponsor and a Supporting sponsor of the GOAL program.
• Rochemid / tier-3 sponsorStrategic or Co-development PartnerRoche is a Bronze Corporate Advisory Sponsor and a Family Heart Global Summit 2026 sponsor (Hoffmann-La Roche).
• Chiesimid / tier-3 sponsorStrategic or Co-development PartnerChiesi is a Family Heart Global Summit 2026 sponsor.
• CRISPR Therapeuticsmid / tier-3 sponsorStrategic or Co-development PartnerCRISPR Therapeutics is a Family Heart Global Summit 2026 sponsor, supporting the Foundation's work on emerging genetic therapies for lipid disorders.
• Editas Medicinemid / tier-3 sponsorStrategic or Co-development PartnerEditas is a Family Heart Global Summit 2026 sponsor, supporting work on gene-editing approaches for inherited lipid disorders.
• GenInCodemid / tier-3 sponsorStrategic or Co-development PartnerGenInCode is a Family Heart Global Summit 2026 sponsor.
• Repair Biotechnologiesmid / tier-3 sponsorStrategic or Co-development PartnerRepair Biotechnologies is a Family Heart Global Summit 2026 sponsor.
• Riley and Susan Bechtel Foundationcore community funderGTM or Marketing PartnerThe Riley and Susan Bechtel Foundation is the named funder of the Community Connect program.
• World Heart Federationflagship advocacy partnerStrategic or Co-development PartnerThe Family Heart Foundation partnered with the World Heart Federation (WHF) throughout 2018 to convene the Global Call to Action on FH meetings of the international FH community from over 40 countries, held in Marina Del Rey, Dubai, and Atlanta. The Global Call to Action was published in JAMA Cardiology in January 2020.
• Matt Hasselbeckflagship ambassadorGTM or Marketing PartnerFormer NFL quarterback Matt Hasselbeck (three-time Pro Bowler, 1999–2015) partnered with the Family Heart Foundation to launch the "Tackle Cholesterol™: Get into the LDL Safe Zone®" campaign to raise awareness of high LDL as a major cardiovascular risk factor. He promotes early screening and Cholesterol Connect's free at-home test, and serves as a Family Heart Foundation Ambassador.
• Courtney Robycore ambassadorGTM or Marketing PartnerFormer NFL player Courtney Roby is a Family Heart Foundation Ambassador. After an unexpected heart attack and a diagnosis of high lipoprotein(a), he raises awareness about inherited cardiovascular risk and family screening.
• Verve Therapeuticsmid clinical-trial partnerStrategic or Co-development PartnerThe Family Heart Foundation promotes a Verve Therapeutics gene-editing clinical trial for a potential one-time investigational medicine to lower high cholesterol, with Family Heart social media tagged with utm_source=family-heart&utm_medium=social-media&utm_campaign=social-media&utm_content=eng.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• American Heart Association: Largest U.S. cardiovascular nonprofit; broad mission across heart disease and stroke with far larger funding base. Overlaps with Family Heart on patient education, advocacy, and research funding for inherited cardiovascular risk, but is not specialized in FH/Lp(a).
• American College of Cardiology (ACC): Major U.S. cardiology professional society publishing lipid guidelines (e.g., 2022 Expert Consensus Decision Pathway referenced by Family Heart) and convening clinicians—the institutional peer Family Heart engages through its Scientific Advisory Board and LDL policy work.
• Preventive Cardiovascular Nurses Association (PCNA): U.S. nursing association advancing preventive cardiovascular care, lipid screening, and patient education; overlaps with Family Heart's clinician and nurse-practitioner audience and CME content.
• World Heart Federation: Global cardiovascular advocacy umbrella; co-led the Global Call to Action on FH with Family Heart and partners in 40+ countries. Comparable as a convening body but at global scale and broader cardiovascular scope.

Direct peers

• FH Europe Foundation: European FH patient and clinical network running registries, screening advocacy, and awareness campaigns—direct international peer to Family Heart's CASCADE FH Registry and FH/Lp(a) awareness programs.
• National Lipid Association: U.S. clinical society focused on lipid disorders; runs Scientific Sessions, clinician education, and lipid specialist training that directly intersect with Family Heart's clinician engagement (CME, scientific advisory board, FIND FH deployment).
• Mended Hearts: U.S. cardiovascular patient-support nonprofit offering peer support, education, and community for heart disease patients and families; structurally and operationally comparable to Family Heart's ambassador and community engagement programs.

Emerging players

• SADS Foundation: U.S. nonprofit focused on genetic cardiac arrhythmia conditions; comparable as a small, specialized inherited cardiovascular nonprofit running awareness, family screening, and clinician education—similar scale and operating model to Family Heart.
• Global Heart Hub: International alliance of cardiovascular patient organizations including FH and Lp(a) communities; comparable community-led, patient-advocacy model with growing overlap in inherited lipid disorder programming.

Regional players

• Heart UK: UK cholesterol charity running screening, education, and policy work including familial hypercholesterolemia programs; comparable mission to Family Heart's Cholesterol Connect, Care Navigation, and LDL Safe Zone initiatives but focused on the UK market.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/FamilyHeartFdn
• YouTubeyoutube.com/@familyheartfoundation
• Facebookfacebook.com/TheFHFoundation
• LinkedInlinkedin.com/company/familyheartfoundation
• Instagraminstagram.com/familyheartfoundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Subsidiaries6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Family Heart Foundation