National Birth Defects Prevention Network

What National Birth Defects Prevention Network does

The National Birth Defects Prevention Network (NBDPN) is a 501(c)(3) nonprofit corporation incorporated on September 8, 2000 (originally formed as an unincorporated network in 1998), headquartered in Brentwood, Tennessee. The organization establishes and maintains a national network of state and population-based programs for birth defects surveillance and research. NBDPN serves more than 40 state and territorial birth defects surveillance programs across the United States, along with epidemiologists, public health professionals, genetic counselors, physicians, and researchers working in birth defects surveillance and prevention. The organization is all-volunteer run and operates under a 2024-2028 strategic plan.

NBDPN's core product portfolio centers on technical and data publications: the Guidelines for Conducting Birth Defects Surveillance (a multi-chapter technical manual covering program establishment, case definitions, data elements, ICD-10-CM classification, and case ascertainment methods); the Birth Defects Data Tables and Directory (biennial state-specific prevalence data on 45 selected birth defects, published since 2000); the Annual Congenital Malformations Surveillance Report (published in the Birth Defects Research Part A journal); State Profiles; Multi-State Collaborative Projects; and National Standards for Birth Defects Surveillance. The technology backbone is a domain-specialized content library rather than a software platform, with no disclosed API or SDK. Distribution runs through a public website, a members-only portal hosting coding Q&A, archived webinars, and statistical programs, plus biennial national conferences (Denver 2025, Atlanta 2023 and 2027).

The business model is a hybrid of membership dues, conference registration, and federal grant support. Tiered annual memberships range from $10 (Student/Emeritus) to $100 (Full/Group), with a $0 non-member tier. The primary funding pillar is a CDC cooperative agreement totaling $1,150,000 with zero non-governmental financing. Revenue is not publicly disclosed, but the CDC grant combined with membership and conference income positions NBDPN as a small association-style nonprofit. The organization also runs three annual awareness campaigns (Birth Defects Awareness Month in January, CMV Awareness Month in June, Folic Acid Awareness Week in September) with downloadable toolkits, and operates a member retail store and donation channel.

Name

National Birth Defects Prevention Network

Legal name

National Birth Defects Prevention Network Inc.

Website

https://nbdpn.org

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

11–50 employees

Short description

NBDPN is a 501(c)(3) all-volunteer nonprofit that maintains a national network of 40+ state birth defects surveillance programs. It publishes technical surveillance guidelines, biennial state prevalence data tables, and an annual congenital malformations report, supported primarily by CDC cooperative agreement funding.

Ownership category

akta.pro rank

Product category

Public Health Surveillance

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Newborn Screening & Genetic Public Health Laboratories (HLAJAIAJ)

akta.pro secondary industries

Prenatal, Newborn & Reproductive Diagnostics (NIPT, IVF/PGT, newborn screening) (HLAAALAJ), Chronic Disease & NCD Program Evaluation (e.g., diabetes/CVD/cancer) (HLAJANAG)

Keywords

• Birth defects surveillance
• Public health research
• Congenital malformations data
• Population health monitoring
• Epidemiology publications

Headquarters

HQ city

Brentwood

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Membership Dues: Annual membership dues from individual members including Full Members ($100/year), Group Members ($100/year), Student Members ($10/year), and Emeritus/Retiree Members ($10/year).
2. Conference Registration: Revenue from national conference registrations for the biennial NBDPN National Conference, the only national conference for population-based birth defects surveillance programs in the United States.
3. CDC Cooperative Agreement: Project supported by CDC of U.S. Department of Health and Human Services as a cooperative agreement totaling $1,150,000 with zero percentage financed with non-governmental sources.

Pricing tiers

Go-to-market motion2 records

Distribution channels3 records

Marketing channels8 records

Core offering

NBDPN operates a national network of state and population-based birth defects surveillance programs, producing standardized surveillance guidelines, biennial state data tables and directories, and an annual congenital malformations surveillance report. It also runs a biennial national conference, members-only portal with coding resources and archived webinars, and three major awareness campaigns (Birth Defects Awareness Month, CMV Awareness Month, and Folic Acid Awareness Week). The organization serves as the convening body for the U.S. birth defects surveillance community, funded through membership dues, conference fees, and a CDC cooperative agreement.

Product overview

The National Birth Defects Prevention Network (NBDPN) is a 501(c)(3) all-volunteer organization that establishes and maintains a national network of state and population-based programs for birth defects surveillance and research. Its product portfolio centers on a comprehensive suite of data and publication products: the Guidelines for Conducting Birth Defects Surveillance (a multi-chapter technical manual covering program establishment, case definitions, data elements, coding systems, and case ascertainment), the Birth Defects Data Tables and Directory (biennial state-specific prevalence data), the Annual Congenital Malformations Surveillance Report (published in Birth Defects Research journal), State Profiles, and Multi-State Collaborative Projects. These are complemented by an annual National Conference and a Members-Only Portal offering archived webinars, coding resources, and statistical tools. The organization also runs three major awareness campaigns: National Birth Defects Awareness Month (January), CMV Awareness Month (June), and National Folic Acid Awareness Week (September), each with downloadable toolkits containing social media assets, press releases, and educational materials in multiple languages.

Differentiator

Problem solved

Functional benefit

Products and services

• Guidelines for Conducting Birth Defects Surveillance Technical guidelines covering the fundamental aspects of developing, planning, implementing, and conducting surveillance for birth defects, including chapters on establishing programs, case definitions, data elements, health information classification systems, and case ascertainment methods. Targeted at state and population-based birth defects surveillance programs.
• Birth Defects Data Tables and Directory State-specific counts and prevalence of birth defects and a directory of state-based birth defects surveillance programs, published biennially. Provides prevalence data for public health professionals, researchers, and state programs.
• Annual Reports (Congenital Malformations Surveillance Report) Annual report published in the journal Birth Defects Research Part A, including directory information for birth defects programs, state-specific data on 45 selected birth defects, and journal articles on birth defects surveillance and epidemiology. Targeted at researchers and surveillance professionals.
• State Profiles Individual state profiles providing directory information and surveillance data specific to each participating state's birth defects registry. Used by state programs, researchers, and policymakers.
• Multi-State Collaborative Projects Collaborative research projects that utilize data from multiple state birth defects registries to analyze national trends and patterns in birth defects. For researchers and epidemiologists.
• National Standards for Birth Defects Surveillance Standardized frameworks and assessment tools for evaluating birth defects surveillance programs against national benchmarks. For state and territorial surveillance program managers.
• Member Portal Members-only online portal providing access to exclusive resources including birth defects coding Q&A, statistical programs, archived webinars, and advance information on the annual report and annual meeting. For NBDPN members.
• National Conferences Biennial national conference for birth defects surveillance programs offering continuing education through keynote speeches, breakout sessions, and roundtable discussions on surveillance, research, and prevention. For surveillance professionals, researchers, and healthcare providers.

Quantifiable outcome

• Supports surveillance for 45 selected birth defects across 40+ state programs
• +3 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Four partnerships are on record, tiered core and secondary.

• March of DimescoreStrategic or Co-development PartnerMarch of Dimes is a key partner organization. The partnership provides educational resources, collaborative awareness campaigns (particularly for Birth Defects Awareness Month), and member benefits including access to MOD resources and educational materials for healthcare professionals.
• OTIS (Organization of Teratology Information Specialists) / MotherToBabycoreStrategic or Co-development PartnerOTIS/MotherToBaby partners with NBDPN on educational initiatives including webinars for Birth Defects Awareness Month and providing teratology information resources to members and the public.
• Congenital Heart Public Health ConsortiumsecondaryStrategic or Co-development PartnerParticipates in the Operations Committee alongside other partner organizations, providing input on strategic objectives and collaborative projects related to congenital heart defects and birth defects surveillance.
• State Birth Defects Surveillance ProgramscoreStrategic or Co-development PartnerOver 40 state and territory health department programs participate in NBDPN. These programs contribute data to national reports, collaborate on multi-state projects, and implement NBDPN surveillance guidelines. Examples include Texas Birth Defects Registry (active since 1994), California Birth Defects Monitoring Program (since 1983), and New York State Birth Defects Program (since 1982).

Scale indicators5 records

Recent moves2 records

Expansion highlights6 records

Direct peers

• March of Dimes: National nonprofit focused on maternal and infant health, including birth defects prevention. March of Dimes is a named strategic partner of NBDPN, co-runs Birth Defects Awareness Month campaigns, and serves overlapping audiences of families, clinicians, and researchers.
• Association of Maternal & Child Health Programs (AMCHP): National membership association of state Title V maternal and child health programs. Directly comparable structure (membership nonprofit, state program members, federal partnerships) serving overlapping audiences including the state health departments that participate in NBDPN.
• Organization of Teratology Information Specialists (MotherToBaby): Provides evidence-based information on exposures during pregnancy and breastfeeding, including birth defects risks. A named NBDPN strategic partner co-developing educational webinars and teratology resources for overlapping professional and consumer audiences.
• Society for Birth Defects Research and Prevention (BDRP): Scientific society advancing birth defects research through its annual meeting and the journals Birth Defects Research. Directly comparable as a member-driven organization focused on birth defects etiology, surveillance, and prevention serving overlapping research communities.

Broad incumbents

• National Association of County and City Health Officials (NACCHO): Membership organization representing nearly 3,000 local health departments. Comparable as a public-health membership nonprofit with similar governance, federal funding relationships, and conference/publication model serving overlapping local and state public health stakeholders.
• American College of Medical Genetics and Genomics (ACMG): Professional membership organization setting standards for genetic and genomic medicine, including newborn screening. Comparable as a standards-setting membership body whose guidelines (e.g., newborn screening) intersect with NBDPN's birth defects surveillance scope.
• American Public Health Association (APHA): Largest professional public health association in the US. Comparable membership nonprofit model with annual meeting and policy advocacy; broad incumbent whose epidemiology sections overlap with NBDPN's surveillance community.
• CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD): Federal center within CDC that funds and operates national birth defects surveillance (including MACDP) and provides public-facing data on 45+ conditions. Comparable as the dominant funder and public counterpart to NBDPN's coordination role, with overlapping scope and datasets.

Emerging players

• Every Mother Counts: Nonprofit focused on maternal health, pregnancy outcomes, and birth equity through advocacy, storytelling, and grantmaking. Partial overlap with NBDPN's maternal/child health mission and family-facing awareness campaigns, though oriented more toward global maternal mortality.

Others

• Trust for America's Health: Nonprofit policy organization focused on disease prevention and public health funding. Adjacent peer that shares NBDPN's nonprofit advocacy posture and federal-grant-dependence dynamics, and competes for public health philanthropic attention.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/nbdpn
• Facebookfacebook.com/nbdpn
• LinkedInlinkedin.com/company/national-birth-defects-prevention-network
• Instagraminstagram.com/nbdpn

Revenue estimate

Valuation estimate

Number of profiles

Profiles15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about National Birth Defects Prevention Network