Hypertrophic Cardiomyopathy Association

What Hypertrophic Cardiomyopathy Association does

The Hypertrophic Cardiomyopathy Association (HCMA) is a US 501(c)(3) patient advocacy organization founded in 1996 by Lisa Salberg (an HCM patient and transplant recipient) and headquartered in Denville, New Jersey. HCMA serves individuals affected by hypertrophic cardiomyopathy, a genetic cardiac condition affecting an estimated 250,000-400,000 patients in the US and 16-33 million worldwide, along with their families, clinicians, and Centers of Excellence programs. Its core services include personalized intake and navigation calls (15-minute complimentary consultations, 30-60 minute sessions for members), monthly Zoom-based peer discussion groups, the 59-institution Recognized Centers of Excellence (COE) network, and free clinician CME through the HCM Academy. The organization funds itself through membership dues, individual donations (including a McNamee family cumulative contribution of ~$500,000), pharmaceutical educational grants (Bristol Myers Squibb, Cytokinetics, Sanofi, Tenaya Therapeutics), an online merchandise store, and event sponsorships.

HCMA operates an extensive content library spanning diagnosis (ECG, echocardiogram, MRI, genetic testing), symptoms, treatments (myectomy, alcohol septal ablation), and medications (beta-blockers, myosin inhibitors including Camzyos and MYQORZO), with resources translated into multiple languages via the HCMAi international division (active in Sweden, Brazil, France, Mexico, India, EU, Portugal, Czech Republic, and China). The technology stack is a website (4hcm.org) with a Google Translate widget, an embedded Antidote clinical-trial search tool, a Nest companion app partnership, and standard donor/membership portals. HCMA runs a financial-assistance program (Lori Fund micro-grants up to $600/year for travel to COEs), a cardiac arrest preparedness program (Drill Dr. Heart with Defibtech sponsorship), and a legislative advocacy arm (Elizabeth T. McNamee Legislative Advocacy Committee) that has driven passage of the Children's Cardiac Safety Act in Virginia and New Jersey. Distribution is community- and event-led: annual patient meetings, the Bighearted Warrior Tour at partner COEs, Hill Day advocacy, and co-hosted community heart health summits with organizations such as the Newark NAACP.

Name

Hypertrophic Cardiomyopathy Association

Legal name

Hypertrophic Cardiomyopathy Association

Website

https://4hcm.org

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

The Hypertrophic Cardiomyopathy Association (HCMA) is a US nonprofit founded in 1996 that provides education, navigation support, and advocacy for HCM patients, families, and clinicians, operating a 59-center Center of Excellence network, the HCM Academy for clinician CME, and the HCMAi international division across nine countries.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Membership Organizations (8600)

akta.pro primary industry

Health Systems Strengthening & Universal Health Coverage (UHC) (BPADAIAE)

Keywords

• Patient advocacy services
• HCM education resources
• Cardiac disease support
• Nonprofit healthcare services
• Clinician medical education

Headquarters

HQ city

Denville

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, Infrastructure, Supply Chain, Others

Revenue model

1. Membership Dues: HCMA generates revenue through annual membership fees that provide members with 30-minute Navigation Calls (lifetime members receive up to 60 minutes), free Update Calls, and a complimentary copy of 'HCM for Patients, Their Families, and Interested Physicians' by B. Maron and L. Salberg.
2. Donations and Fundraising: HCMA receives donations from individuals, families, and corporate sponsors. The organization conducts fundraising campaigns including the Get Sauced cooking fundraiser and direct donation appeals. Memorial contributions are also solicited in honor of deceased HCM patients.
3. HCMA Online Store: HCMA operates an e-commerce storefront selling branded merchandise, resources, and related items. Revenue from store sales supplements other revenue streams.
4. Pharmaceutical Sponsor Grants: HCMA receives educational grant funding from pharmaceutical companies including Bristol Myers Squibb (Camzyos/Mavacamten), Cytokinetics (MYQORZO/Aficamten), Sanofi, and Tenaya Therapeutics to support programs such as the HCM Academy for clinician education.
5. Lori Fund Micro-Grants (Program): The Lori Fund provides up to $600 per year in micro-grants for travel, meals, and hotels for HCM patients with financial need visiting a COE. This is a disbursement program funded by donations, not a revenue-generating activity.

Pricing tiers

Go-to-market motion2 records

Distribution channels7 records

Marketing channels12 records

Core offering

HCMA delivers free and membership-based patient education, intake and navigation calls, and a directory of HCMA Recognized Centers of Excellence (COEs) for individuals affected by hypertrophic cardiomyopathy. It funds its mission through annual membership dues, donations, pharmaceutical educational grants, e-commerce merchandise sales, and event sponsorships, while providing clinician CME via the HCM Academy, peer support through monthly online discussion groups, financial travel assistance via the Lori Fund, and legislative advocacy including the Children's Cardiac Safety Act.

Product overview

The Hypertrophic Cardiomyopathy Association (HCMA) is a patient advocacy and support organization offering a comprehensive suite of educational, support, and advocacy services for the HCM community. The core offering is the 4hcm.org website, which serves as a central hub providing extensive information on HCM diagnosis, symptoms, treatments, and patient resources. Key programs include Intake & Navigation Calls providing personalized support, the HCMA Recognized Centers of Excellence network, HCM Academy for clinician education, HCMAi for international outreach, online patient discussion groups, the Lori Fund for travel assistance, and advocacy initiatives including the Children's Cardiac Safety Act. The organization also provides video archives, podcasts, volunteer recognition programs, and hosts an annual patient meeting. These offerings work together to educate, support, and advocate for HCM patients and their families worldwide.

Differentiator

Problem solved

Functional benefit

Brands

• HCM Academy: Digital independent medical education program for healthcare professionals, offering CME credits and webinars on HCM diagnosis and management.
• Drill Dr. Heart
• HCMA NEST Portal
• GEMS Volunteer Awards Program

Products and services

• HCMA Online Store E-commerce storefront selling branded HCMA merchandise including apparel, accessories, and resources to HCM patients, supporters, and community members; store voucher prizes are awarded across GEM volunteer recognition tiers.
• HCMA Membership Annual paid subscription that unlocks extended patient navigation calls, the HCM reference book, secure portal access, and member benefits for HCM patients and their families.
• Intake and Navigation Calls Personalized one-on-one consultations providing HCM education, treatment decision support, medication guidance, and care navigation delivered by HCMA intake coordinators (Sabrina, Linda, Arti).
• HCM Academy Free continuing medical education program for clinicians covering HCM diagnosis, treatment, arrhythmia management, exercise, pregnancy, and apical HCM identification, delivered through live and on-demand webinars and case studies.
• Annual Patient Meeting and Gala Annual educational conference for HCM patients, families, and supporters featuring expert clinician presentations, networking sessions, the GEM Awards ceremony, and the 'Unmask the Great Masquerader' gala.
• Lori Fund Micro-Grants for the Bighearted Micro-grants program that provides up to $600 annually to HCM patients with financial need to cover travel, meals, and lodging costs when visiting HCMA Recognized Centers of Excellence, with air travel coordinated via the Angel Flight partnership.
• Online Patient Discussion Groups Monthly Zoom-based peer support meetings hosted by trained volunteer leaders, with cohorts for newly diagnosed patients, symptom management, and specific population-based discussion.

Quantifiable outcome

• 59 HCMA Recognized Centers of Excellence established across the US, Canada, Europe, and other regions
• +5 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration2 records

Partnerships

Seven partnerships are on record, tiered minor and core.

• Newark NAACPminorStrategic or Co-development Partner · 8 April 2026The Newark NAACP and HCMA co-hosted a free heart health summit on April 18, 2026, at Metropolitan Baptist Church in Newark, New Jersey. The summit aimed to empower community wellness by raising awareness of HCM and cardiac health in the local community.
• Imbria PharmaceuticalscoreStrategic or Co-development Partner · 16 October 2025Imbria Pharmaceuticals partnered with HCMA in October 2025 to support recruitment for the Phase 2b FORTITUDE-HCM clinical trial evaluating ninerafaxstat for non-obstructive HCM (nHCM). HCMA assists by raising awareness among its patient community and connecting eligible patients to the trial, which is actively enrolling in the US and planning expansion to Europe and the UK. The trial addresses a condition affecting approximately 250,000–400,000 US patients with no current approved therapies.
• Angel FlightcoreStrategic or Co-development PartnerAngel Flight provides free air travel for HCMA Lori Fund applicants who need to travel to Centers of Excellence for HCM care. This partnership reduces financial barriers for low-income patients who cannot afford transportation to specialist care.
• PCM ScientificcoreImplementation/ SI/ Consulting PartnerPCM Scientific serves as the medical education company acting as scientific secretariat and organizer for the HCM Academy program. All HCM Academy content is created by expert faculty independently of the funder companies, with PCM Scientific managing logistics and scientific coordination.
• DefibtechminorGTM or Marketing PartnerDefibtech is a partner in the Drill: Dr. Heart cardiac arrest preparedness program, providing AED sponsorship for the annual challenge. Four AEDs are given away each year to winning schools, sports teams, houses of worship, or community organizations that complete the Drill: Dr. Heart program.
• HCMSS (Hypertrofisk Kardiomyopatis Svenska Sällskap) — SwedencoreChannel Partner/ Reseller/ DistributorHCMSS is the Swedish affiliate of HCMAi, founded in 2022 to provide support and education for people with HCM in Sweden and to prevent HCM deaths. It translates HCMA materials into Swedish and promotes research and care around HCM in Sweden.
• HCMAi International Affiliates (Brazil, France, Mexico, India, EU, Portugal, Czech Republic, China)minorChannel Partner/ Reseller/ DistributorHCMAi international affiliates in Brazil, France, Mexico, India, EU, Portugal, Czech Republic, and China translate HCMA educational resources into local languages and build regional HCM support networks, patient advocacy organizations, and healthcare provider education programs tailored to each country's healthcare system.

Scale indicators9 records

Recent moves7 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders: Umbrella advocacy organization for all rare diseases. Broader scope than HCMA but provides policy infrastructure, advocacy training, and rare disease awareness that HCMA benefits from and could be subsumed under.
• American Heart Association: The dominant US cardiovascular advocacy and research organization. Operates broadly across all heart conditions including HCM-relevant programs; a massive incumbent that competes for the same donor dollars, sponsorship, and legislative attention.
• Cystic Fibrosis Foundation: Highly successful disease-specific patient advocacy nonprofit with mature care center network, research funding, and pharma partnerships. Represents the gold-standard operating model that HCMA could scale toward for HCM.

Direct peers

• Sudden Cardiac Arrest Foundation: Advocacy organization focused on sudden cardiac arrest, a major complication of HCM. Overlapping mission (1-2% annual SCD risk in HCM populations), similar patient education and AED/emergency preparedness programs analogous to HCMA's Drill Dr. Heart initiative.
• Pulmonary Hypertension Association: A rare cardiopulmonary disease patient advocacy organization with a nearly identical operating model: Centers of Excellence accreditation, patient navigation, clinician education, research funding, legislative advocacy, and pharmaceutical partnerships. Closest structural analog to HCMA.
• Parent Project Muscular Dystrophy: A disease-specific advocacy nonprofit for Duchenne muscular dystrophy. Highly comparable model: patient navigation, certified care center network, clinical trial recruitment support, federal/state advocacy, and pharmaceutical grant funding — applied to a rare genetic disease.
• Mended Hearts: Peer-support organization for heart disease patients and families, founded in 1951. Operates a hospital visitation program, support groups, and patient education — highly analogous community-led patient support model, though covering all cardiovascular conditions rather than HCM-specific.
• Children's Cardiomyopathy Foundation: A patient advocacy organization specifically focused on cardiomyopathy in children. Most directly comparable to HCMA given the shared disease focus (cardiomyopathy), similar member/COE-style programming, and patient navigation model — though pediatric rather than general HCM.
• Amyloidosis Research Consortium: Advocacy and research organization for cardiac amyloidosis, an HCM phenocopy that HCMA explicitly addresses in clinician education. Comparable rare-disease patient advocacy structure with pharma partnerships and Centers of Excellence model.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/c/4hcmvideos/videos
• Facebookfacebook.com/groups/830709766982009
• LinkedInlinkedin.com/company/hypertrophic-cardiomyopathy-association

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Subsidiaries1 record

Funding overview

Funding rounds1 record

Investors1 record

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Hypertrophic Cardiomyopathy Association