Save Babies Through Screening Foundation

What Save Babies Through Screening Foundation does

Save Babies Through Screening Foundation is a parent-run, volunteer-driven 501(c)(3) nonprofit foundation incorporated in Florida (Tax ID 58-2509450) and operating from P.O. Box 2313, Palm Harbor, FL. It is described in its own materials as the only national nonprofit exclusively devoted to newborn screening advocacy, and its mission is to ensure that every newborn in the United States undergoes comprehensive and effective screening for disorders that are typically hidden at birth. The organization pursues this mission through education of expectant families, pediatric healthcare workers, lawmakers, and institutional policymakers, rather than through any direct clinical service delivery.

The foundation's product surface is centered on a web-based education platform (savebabies.org) comprising a state-by-state screening information database covering all 50 states, a searchable disorder descriptions library covering more than 50 screenable conditions (including MCADD, PKU, galactosemia, cystic fibrosis, SCID, and CAH), a practitioner portal hosting ACMG ACT Sheets and continuing-education modules, and a multilingual video library available in English, Spanish, Simplified Chinese, Russian, and Romanian. Additional offerings include free supplemental newborn screening packets distributed through a corporate partnership with Perkin Elmer Genetics, Inc. for qualifying expectant parents, and a mail-based resource order form for printed materials. Distribution channels span the website, a toll-free phone line (1-888-454-3383), mail, social media (Facebook, Twitter/X, Pinterest, YouTube, Vimeo), and referrals from pediatric healthcare providers and state newborn screening programs.

The organization's revenue model is donation-based: contributions from individuals, corporations, and workplace giving programs such as United Way Write-in Campaigns. All services and educational resources are provided free of charge, with tax-deductible status under IRS 501(c)(3). The foundation is governed by a board including President Jill Levy-Fisch, Vice President Sarah Wilkerson, Treasurer Anne Rugari, and Secretary Taryn Paladiy, and is advised by medical advisors R. Rodney Howell, M.D., and Michele Lloyd-Puryear, MD, PhD. It maintains formal referral relationships with American College of Medical Genetics, March of Dimes, HRSA, NewSTEPs, NORD, Baby's First Test, Family Voices, and condition-specific advocacy organizations.

Name

Save Babies Through Screening Foundation

Legal name

Save Babies Through Screening Foundation

Website

https://savebabies.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Save Babies Through Screening Foundation is a parent-run, volunteer 501(c)(3) nonprofit that educates expectant families, pediatric healthcare practitioners, and policymakers on newborn screening through a web platform, multilingual videos, free screening packets, and advocacy resources across all 50 US states.

Ownership category

akta.pro rank

Product category

Newborn Screening Advocacy and Education Services

NAICS

Child and Youth Services (62411), Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Newborn Screening & Genetic Public Health Laboratories (HLAJAIAJ)

akta.pro secondary industries

Health Screening & Preventive Care Programs (Vision/Hearing/Immunization) (EDACAMAJ), Maternal, Child & Family Health Program Funding (HLAJALAG)

Keywords

• Newborn screening advocacy
• Newborn health education
• Genetic disorder awareness
• Pediatric screening resources
• Nonprofit health foundation

Headquarters

HQ city

Palm Harbor

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Contributions: Save Babies Through Screening Foundation operates as a 501(c)(3) nonprofit organization. The foundation accepts donations from individuals, corporations, and through workplace giving programs such as United Way Write-in Campaigns. All gifts are tax-deductible under IRS 501(c)(3) status. Tax ID: 58-2509450.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Save Babies Through Screening Foundation operates a free, web-based newborn screening education and advocacy platform serving U.S. families, pediatric healthcare practitioners, and policymakers. Core deliverables include state-by-state screening requirement information, a searchable library of 50+ disorder descriptions, multilingual educational videos, free supplemental newborn screening packets for qualifying expectant parents, and practitioner-facing resources including ACMG ACT Sheets and continuing education modules.

Product overview

Save Babies Through Screening Foundation operates a comprehensive web-based educational platform focused on newborn screening advocacy and awareness. The core offering consists of an informational website providing state-specific screening guidelines, a searchable disorder descriptions library covering over 50 screenable conditions, and multilingual video resources. Additional offerings include free supplemental newborn screening packets for qualifying families, practitioner resources with continuing education modules, and print material ordering. The platform serves both families expecting newborns and healthcare practitioners, functioning primarily as an education and advocacy resource rather than a commercial product.

Differentiator

Problem solved

Functional benefit

Products and services

• Save Babies Newborn Screening Education Platform Free web-based educational platform providing information about newborn screening tests, the disorders screened, state-specific screening requirements, and follow-up procedures for parents and pediatric healthcare practitioners in the United States.
• Free Newborn Screening Packets Tangible supplemental newborn screening packets distributed free of charge to qualifying expectant parents through a corporate in-kind partnership with Perkin Elmer Genetics, screening for additional disorders beyond state-mandated panels.
• Practitioner Resources Portal Educational portal for pediatric healthcare practitioners providing ACMG ACT Sheets, newborn screening confirmatory algorithms, continuing education (CE and MOC) modules, and links to regional genetic and newborn screening service collaboratives.
• Disorder Descriptions Library Searchable online library of detailed disorder descriptions for more than 50 genetic and metabolic conditions detectable through newborn screening, available to families and clinicians.
• Multilingual Video Education Library Library of newborn screening educational videos available in English, Spanish, Simplified Chinese, Russian, and Romanian, covering topics including what newborn screening is, the bloodspot heel prick, and life with specific disorders such as galactosemia.

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

Twelve partnerships are on record, tiered core and minor.

• Perkin Elmer Genetics, Inc.coreOthersPerkin Elmer Genetics, Inc. partners with Save Babies Through Screening Foundation to provide free newborn screening packets for qualifying pregnant families. Through their generosity and foundation funding, a limited number of newborn screening packets for additional screening are available each month at no cost for expectant parents who qualify.
• American College of Medical Genetics (ACMG)coreStrategic or Co-development PartnerACMG provides ACT Sheets and algorithms that are recommended resources for health care providers regarding genetic conditions identified through newborn screening. The foundation's practitioner resources page prominently features ACMG materials developed in partnership with the National Coordinating Center for the Regional Genetics Networks.
• March of DimesminorStrategic or Co-development PartnerMarch of Dimes is listed as a family resource on the foundation's Families with Diagnoses page. Both organizations share the mission of improving maternal and infant health outcomes.
• NORD (National Organization for Rare Disorders)minorStrategic or Co-development PartnerNORD is listed as a resource for families affected by rare disorders detected through newborn screening. NORD provides advocacy, education, and support services for individuals with rare diseases and the organizations that serve them.
• NewSTEPs (Newborn Screening Technical assistance and Evaluation Program)coreStrategic or Co-development PartnerNewSTEPs is a national newborn screening resource center that provides data, technical assistance, and training to newborn screening programs. The foundation references NewSTEPs resources for home births, state profiles, and educational materials for midwives and birth attendants.
• Health Resources and Services Administration (HRSA)coreStrategic or Co-development PartnerHRSA, through the Maternal and Child Health Bureau, funds the Regional Genetic and Newborn Screening Service Collaboratives. The foundation connects practitioners to federal resources including the Recommended Uniform Screening Panel (RUSP).
• National Coordinating Center for the Regional Genetics Networks (NCCRCG)coreStrategic or Co-development PartnerThe NCCRCG provides infrastructure and coordination for seven Regional Genetics and Newborn Screening Service Collaboratives. Foundation's practitioner page links to all regional networks including New England, NYMAC, Southeast, Heartland, Midwest, Mountain States, and Western States.
• Baby's First TestminorStrategic or Co-development PartnerBaby's First Test is referenced as a resource to help parents and health professionals understand newborn screening conditions and state-specific variations.
• Family VoicesminorStrategic or Co-development PartnerFamily Voices is a national family-led organization supporting families of children with special health care needs. Listed as a resource for families navigating newborn screening and related services.
• Cystic Fibrosis FoundationminorStrategic or Co-development PartnerListed as a disorder support organization for families affected by cystic fibrosis, one of the conditions screened through newborn screening programs.
• SCID, Angels for Life FoundationminorStrategic or Co-development PartnerNon-profit dedicated to helping implement newborn screening for Severe Combined Immunodeficiency (SCID) in all 50 states so no more babies die from this treatable disease.
• CARES FoundationminorStrategic or Co-development PartnerCARES Foundation advances quality health care through support, advocacy, education, and research related to Congenital Adrenal Hyperplasia (CAH), a disorder screened in newborn screening programs.

Scale indicators2 records

Recent moves5 records

Expansion highlights3 records

Direct peers

• National Organization for Rare Disorders (NORD): A national rare-disease advocacy organization explicitly listed as a partner/resource on SBTSF's site. Directly comparable as a family-facing advocacy nonprofit serving patients with rare, often genetic, conditions — many of which are detected via newborn screening.
• Baby's First Test: A newborn screening education resource cited by SBTSF. Provides comparable state-by-state screening information and disorder descriptions, making it the closest direct functional peer in the newborn screening information space.
• CARES Foundation: A nonprofit advancing care for Congenital Adrenal Hyperplasia (CAH) — a condition screened via newborn screening. Directly comparable as a single-disorder advocacy organization with similar parent-run nonprofit structure.
• Family Voices: A national family-led organization supporting families of children with special healthcare needs, listed as a resource by SBTSF. Directly comparable as a parent-led advocacy nonprofit serving the same family demographic around screening and diagnosis navigation.
• EveryLife Foundation for Rare Diseases: A rare-disease policy advocacy nonprofit. Comparable in mission scope (federal-level newborn screening policy) and target audience (families affected by screenable genetic conditions), though with a broader rare-disease mandate.
• SCID, Angels for Life Foundation: A small nonprofit specifically dedicated to implementing newborn screening for Severe Combined Immunodeficiency (SCID) in all 50 US states. Highly comparable as a single-condition screening advocacy nonprofit working in the same policy domain.

Broad incumbents

• March of Dimes: A larger, established maternal and infant health nonprofit referenced as a family resource on SBTSF's own site. Overlaps directly on the mission of improving newborn health outcomes but operates a much broader portfolio including prematurity research and maternal health.
• American College of Medical Genetics (ACMG): A professional medical society whose ACT Sheets and algorithms are core practitioner resources promoted by SBTSF. Comparable as an authoritative voice in newborn screening clinical guidance, though operating as a professional society rather than family-facing nonprofit.
• Cystic Fibrosis Foundation: A large, established disorder-specific nonprofit for cystic fibrosis — one of the conditions screened via newborn screening. Listed as a disorder support organization by SBTSF and operating a comparable family-support and advocacy model at much greater scale.

Others

• Health Resources and Services Administration (HRSA) — Maternal and Child Health Bureau: A federal agency that funds the Regional Genetic and Newborn Screening Service Collaboratives and houses the RUSP. Not a peer in the commercial sense, but a direct counterpart in the public newborn screening ecosystem that SBTSF connects families and practitioners to.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/SaveBabiesFoundation
• Facebookfacebook.com/groups/76386091328
• Pinterestpinterest.com/screenbabies
• LinkedInlinkedin.com/company/save-babies-through-screening-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Save Babies Through Screening Foundation