Every 100th Heart

Name

Every 100th Heart

Legal name

Every 100th Heart

Website

https://every100thheart.org

Company type

Private

Founded year

2026

Operating status

Operating

Ownership category

akta.pro rank

Product category

Health Advocacy Services

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Heart Failure & Transplant Cardiology (HLAKABAD)

Keywords

• Congenital heart disease
• Patient advocacy coalition
• Federal health policy
• Nonprofit health coalition
• CHD advocacy services

Headquarters

HQ city

S Central Washington Co

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Distribution channels1 record

Marketing channels7 records

Core offering

Every 100th Heart is a national nonprofit advocacy coalition that advances U.S. federal health policy for congenital heart disease (CHD). It operates as a unified platform bringing together patient advocacy organizations, clinicians, researchers, and families to advocate for federal research funding, insurance access, device access, and transplant equity for CHD patients. The coalition delivers advocacy training, policy education, congressional engagement events, and coordinated policy campaigns.

Product overview

Every 100th Heart is a national coalition organization (not a technology product company) focused on advancing congenital heart disease (CHD) as a federal health policy priority. The organization offers advocacy programs including the National CHD Advocacy Summit (May 19-20, 2026), the CHD Champions Network for advocate training, and federal policy advocacy services addressing insurance coverage, research funding, device access, and transplant equity. The coalition unites six founding organizations with decades of experience in CHD care, research, and advocacy.

Differentiator

Problem solved

Functional benefit

Products and services

• National CHD Advocacy Summit An in-person, two-day advocacy summit in Washington, D.C. (May 19-20, 2026) for CHD patients, families, clinicians, researchers, and advocates that combines advocacy training, storytelling workshops, mock congressional meetings, an Innovation & Policy Showcase, and a Hill Day of meetings with members of Congress.
• CHD Champions Network A network designed to equip and empower patients, families, clinicians, and other advocates with tools and training to use their voices effectively to drive practical federal policy change for congenital heart disease.
• Federal Policy Advocacy Services Coordinated national policy agenda advancement focused on insurance barriers, federal research funding, access to CHD-specific treatments and devices, and equitable heart transplant access for CHD patients.
• National CHD Advocacy Summit Registration Portal Online registration platform for the National CHD Advocacy Summit in Washington, D.C., with scholarship application functionality for travel and registration support.

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

42 partnerships are on record, tiered core and supporting.

• Additional VenturescoreStrategic or Co-development PartnerFounding partner organization; CEO Kirstie Keller, Ph.D. serves on Board of Directors; Director Diane Pickles serves on Steering Committee; provided initial funding to support coalition's launch and operations; brings experience in advancing care, research and advocacy for the CHD community
• Adult Congenital Heart Association (ACHA)coreStrategic or Co-development PartnerFounding partner; President & CEO Mark Roeder serves on Board of Directors; Director Janine Guglielmino serves on Steering Committee; nearly two decades of experience advancing critical legislation for federal funding of research; expanding advocacy into insurance barriers and access to CHD treatments and devices
• American Heart AssociationcoreStrategic or Co-development PartnerFounding partner; National Senior Vice President Emily Holubowich serves on Steering Committee; nearly two decades of federal advocacy experience; focused on coverage, care access, and federal research investment for lifesaving discoveries
• Children's Heart FoundationcoreStrategic or Co-development PartnerFounding partner; President & CEO Terry Morrow serves on Board of Directors; advancing care, research and advocacy for the CHD community
• Conquering CHDcoreStrategic or Co-development PartnerFounding partner; Board Chair Sarah Boes serves on Board of Directors; Executive Director Carissa Ostrom serves on Steering Committee; focused on medical advancements and national attention needed for children and families living with CHD
• Mussallem CHD AlliancecoreStrategic or Co-development PartnerFounding partner; President Orin Herskowitz serves on Board of Directors; EVP Perry Bridger serves on Steering Committee; focused on innovation across research, clinical care and policy; working to align federal and state policymakers with resources for congenital heart disease patients
• American College of Cardiology (ACC)coreStrategic or Co-development PartnerFounding partner; coalition will host in-person kickoff event March 28 at ACC's Annual Scientific Session in New Orleans, Louisiana; represented on steering committee
• Stronger Hearts FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• Intermountain Healing HeartssupportingStrategic or Co-development PartnerCoalition member organization
• Heart Valve Voice USsupportingStrategic or Co-development PartnerCoalition member organization
• Mended Little HeartssupportingStrategic or Co-development PartnerCoalition member organization
• Sister By HeartsupportingStrategic or Co-development PartnerCoalition member organization
• Levi's LegacysupportingStrategic or Co-development PartnerCoalition member organization
• Ever PlusesupportingStrategic or Co-development PartnerCoalition member organization
• Heart HeroessupportingStrategic or Co-development PartnerCoalition member organization
• Hope For Heart KidssupportingStrategic or Co-development PartnerCoalition member organization
• Women HeartsupportingStrategic or Co-development PartnerCoalition member organization
• The Brett Boyer FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• Heart Warrior Achievement ScholarshipsupportingStrategic or Co-development PartnerCoalition member organization
• It's My HeartsupportingStrategic or Co-development PartnerCoalition member organization
• Project BubaloosupportingStrategic or Co-development PartnerCoalition member organization
• Transplant FamiliessupportingStrategic or Co-development PartnerCoalition member organization
• Heart2HeartsupportingStrategic or Co-development PartnerCoalition member organization
• Hearts HenrysupportingStrategic or Co-development PartnerCoalition member organization
• Zipper BuddysupportingStrategic or Co-development PartnerCoalition member organization
• Claire the Heart WarriorsupportingStrategic or Co-development PartnerCoalition member organization
• HeartworkssupportingStrategic or Co-development PartnerCoalition member organization
• Children's Cardiomyopathy FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• HeartfeltsupportingStrategic or Co-development PartnerCoalition member organization
• Children's HeartlinksupportingStrategic or Co-development PartnerCoalition member organization
• Giving Heart FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• Graeme McDaniel FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• Hole in the HeartsupportingStrategic or Co-development PartnerCoalition member organization
• Envision MedTechsupportingStrategic or Co-development PartnerCoalition member organization focused on medtech innovation
• John Dimitri Heart FoundationsupportingStrategic or Co-development PartnerCoalition member organization
• Society for Cardiovascular Angiography & Interventions (SCAI)supportingStrategic or Co-development PartnerCoalition member organization - medical society
• Miles of LovesupportingStrategic or Co-development PartnerCoalition member organization
• Cleveland ClinicsupportingStrategic or Co-development PartnerClinical Advisory Board member: Dr. Brad Marino, Chief of Cardiology, serves as Chair of Clinical Advisory Board
• Children's Hospital ColoradosupportingStrategic or Co-development PartnerClinical Advisory Board members: Dr. Shelley Miyamoto, Chief of Cardiology, and Dr. Keila Lopez, Director of Health Policy, serve on Clinical Advisory Board
• Children's National HospitalsupportingStrategic or Co-development PartnerClinical Advisory Board member: Dr. Anitha John, Medical Director, Washington Adult Congenital Heart Program, serves on Clinical Advisory Board
• Cincinnati Children's HospitalsupportingStrategic or Co-development PartnerClinical Advisory Board member: Dr. Angie Lorts, Director of Ventricular Assist Device Program, serves on Clinical Advisory Board
• CURA StrategiessupportingStrategic or Co-development PartnerSVP Scott Leezer serves on Board of Directors; public affairs and communications partner supporting coalition operations

Scale indicators7 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• National Organization for Rare Disorders (NORD): Coalition-style advocacy organization representing patients with rare diseases; operates a similar multi-stakeholder model uniting disease-specific advocacy groups to advance federal research funding and access policy.
• March of Dimes: Long-standing nonprofit focused on maternal and infant health, including birth defects. Runs a comparable federal advocacy and research funding model targeting congenital conditions, and competes for similar congressional attention on birth-defect policy.
• Children's Heart Foundation: Founding member focused on CHD research funding for children; comparable in mission and constituency (CHD patients/families) and runs parallel advocacy and research investment programs to Every 100th Heart.
• Adult Congenital Heart Association (ACHA): Founding member of Every 100th Heart and a leading U.S. nonprofit dedicated specifically to adult congenital heart disease, with decades of federal advocacy experience including the original CHD Futures Act. Operates a similar patient-advocate-clinician model for CHD policy.

Others

• National Health Council: Umbrella coalition of patient advocacy organizations; provides policy coordination infrastructure and is a potential ecosystem partner or comparable umbrella-model entity that supports disease-specific advocacy groups engaging federal policymakers.

Broad incumbents

• American Heart Association: Founding member and the dominant U.S. cardiovascular advocacy organization with vastly larger resources and broader scope; conducts federal advocacy across cardiovascular policy including CHD-relevant insurance and research funding.
• American Lung Association: Major disease-specific advocacy organization with sustained federal lobbying on research funding (NIH), insurance coverage, and clean air policy; illustrates the scaled coalition model Every 100th Heart aspires to build for CHD.
• American Cancer Society Cancer Action Network (ACS CAN): Separate 501(c)(4) advocacy arm of the American Cancer Society; serves as the model for a disease-specific federal lobbying organization with dedicated infrastructure, grassroots lobbyist networks, and policy staff.
• Muscular Dystrophy Association: Established disease-specific advocacy nonprofit with federal policy agenda on research funding, insurance access, and care for neuromuscular conditions; comparable model for converting a defined patient population into coordinated federal advocacy.

Regional players

• Children's Hospital Association: U.S. advocacy organization representing children's hospitals including pediatric cardiac centers; runs federal advocacy on Medicaid, pediatric research funding (including NHLBI-relevant issues), and access to specialized pediatric care — overlapping meaningfully with Every 100th Heart's policy agenda.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/every-100th-heart
• Instagraminstagram.com/every100thheart

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Funding overview

Funding rounds

Investors

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 Every 100th Heart