What Jeffrey Modell Foundation does

The Jeffrey Modell Foundation (JMF) is a 501(c)(3) nonprofit charitable organization founded in 1987 by Fred and Vicki Modell after their son Jeffrey was diagnosed with Primary Immunodeficiency (PI). Headquartered at 780 Third Avenue, New York, NY, the foundation operates as the leading single-disease global nonprofit focused on accelerating earliest possible diagnosis, connecting patients to life-changing treatments, and advancing cures for Primary Immunodeficiency. JMF serves patients and families affected by PI, practicing immunologists and allied healthcare professionals, and patient advocacy organizations across more than 60 countries, with primary operating geographies spanning North America, Latin America, Europe, Asia, the Middle East, Africa, and Oceania.

JMF's core product suite is anchored by two proprietary technology offerings and a global clinical network. SPIRIT® Analyzer is an EHR-based screening tool that analyzes 1,400 ICD-10 codes and 17,868 pharmacy codes against the foundation's 10 Warning Signs of PI to identify undiagnosed patients; an internal study cited $40 billion in potential healthcare cost savings and a $108,462 average annual cost differential between diagnosed and undiagnosed patients. Jeffrey's Insights is a no-cost genetic sequencing program available through the Jeffrey Modell Centers Network (JMCN) that has sequenced 6,500+ patients and identified 52,000+ genetic variants since its 2019 launch, with 38% of patients experiencing treatment changes and 35% experiencing outcome changes. The JMCN is JMF's flagship clinical infrastructure—a diagnostic and research center network spanning five continents. Surrounding programs include WinMD/WinRN travel grants for medical conference attendance, WIN grants (up to $5,000) for global patient organizations in 46+ countries, Roots & Wings family travel assistance, KIDS DAYS community events (nearly 900 hosted), the World PI Week awareness campaign (April 22-29), the 'When I Grow Up' and 'Know the Warning Signs' PSA campaigns, and the recently launched JMF Speaker Series (October 2025) for clinician continuing education.

The foundation operates a donation-and-grant-funded revenue model: charitable contributions, foundation grants (notably the Bill & Melinda Gates Foundation polio eradication collaboration announced November 28, 2012), and corporate partnerships with eight major immunoglobulin and gene-therapy manufacturers (CSL Behring, Takeda, Grifols, ADMA Biologics, Rocket Pharmaceuticals, Pharming, X4 Pharmaceuticals, Chiesi Global Rare Diseases). JMF collaborates extensively with U.S. federal agencies (NIH/NIAID, CDC, HRSA, NHGRI) and international PI societies (ESID, IPOPI, LASID, ASID, CIS, INGID). Its go-to-market is community-led: the foundation distributes services through its self-serve website (info4pi.org), the JMCN, and a network of nearly 60 partner patient organizations, supported by PSA, social media, and CME-accredited virtual event channels. Nine consecutive years of Charity Navigator four-star ratings (ranking #1 in Immunology out of 10,000 organizations) underscore its fundraising credibility.

Name

Jeffrey Modell Foundation

Legal name

The Jeffrey Modell Foundation

Website

https://info4pi.org

Company type

Private

Founded year

1987

Operating status

Operating

Headcount range

1–10 employees

Short description

The Jeffrey Modell Foundation is a 1987-founded global nonprofit advancing Primary Immunodeficiency (PI) diagnosis, treatment, and cures through proprietary EHR screening software (SPIRIT®), no-cost genetic sequencing (Jeffrey's Insights), the five-continent Jeffrey Modell Centers Network, and grant programs serving patients, families, clinicians, and patient organizations across 60+ countries.

Ownership category

akta.pro rank

Product category

Nonprofit Health Foundation

NAICS

Voluntary Health Organizations (813212), Research and Development in Biotechnology (except Nanobiotechnology) (541714)

SIC

Services-Misc Health & Allied Services, Nec (8090), In Vitro & In Vivo Diagnostic Substances (2835)

akta.pro primary industry

Maternal, Newborn & Child Health (MNCH) Programs (BPADAIAC)

Keywords

• Primary immunodeficiency advocacy
• Newborn screening programs
• Genetic sequencing services
• Medical research grants
• Patient support programs

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: The Jeffrey Modell Foundation is a nonprofit charitable organization that raises funds through donations to support its mission of early diagnosis, treatment, and cures for Primary Immunodeficiency. The foundation runs a donation page on its website and has received multi-million dollar commitments from its founders for SCID newborn screening.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

The Jeffrey Modell Foundation (JMF) is a nonprofit charitable organization that accelerates earliest possible diagnosis, connects patients to life-changing treatments, and funds cures for Primary Immunodeficiency (PI). Its offerings include the SPIRIT® Analyzer EHR-based screening tool, the no-cost Jeffrey's Insights genetic sequencing program, the Jeffrey Modell Centers Network (JMCN) of diagnostic and research centers, multiple grant programs (WinMD, WinRN, WIN, Roots & Wings), the JMF Speaker Series for clinician education, KIDS DAYS community events, and global awareness campaigns such as World PI Week and PSA campaigns.

Product overview

The Jeffrey Modell Foundation offers a comprehensive suite of programs and tools focused on Primary Immunodeficiency (PI). The core products include SPIRIT® Analyzer, an EHR-based screening tool matching ICD-10 and pharmacy codes against the 10 Warning Signs; Jeffrey's Insights, a no-cost genetic sequencing program for suspected PI patients; and the JMF Speaker Series for global education. The Foundation provides multiple grant programs: WinMD and WinRN grants for medical professionals to attend PI conferences, WIN grants for global patient organizations, and Roots & Wings travel assistance for families of children with life-threatening PI. Additional offerings include KIDS DAY community events, World PI Week awareness campaigns, PSA campaigns, Find an Expert Immunologist service, newborn screening advocacy, and educational resources including the Spy the 10 Warning Signs interactive game and PI and Me coloring book. The Jeffrey Modell Centers Network spans five continents, and the Foundation maintains partnerships with pharmaceutical companies, government agencies, and PI societies.

Differentiator

Problem solved

Functional benefit

Brands

• Jeffrey Modell Centers Network (JMCN): Network of diagnostic and research centers for Primary Immunodeficiency
• JMF Speaker Series
• Jeffrey's Insights
• SPIRIT® Analyzer
• Roots & Wings
• WinMD Grant
• WinRN Grant
• WIN Grant
• KIDS DAYS
• World PI Week
• Vicki's Corner
• 10 Warning Signs
• Spy the 10 Warning Signs Game
• GENIE Grant

Products and services

• SPIRIT® Analyzer A cost-effective, AI-enabled EHR-based screening tool that analyzes 1,400 ICD-10 codes and 17,868 pharmacy codes against the 10 Warning Signs of PI to identify patients at risk for Primary Immunodeficiency. Aimed at healthcare providers and health systems for early diagnosis.
• Jeffrey's Insights A no-cost genetic sequencing program available to physicians within the Jeffrey Modell Centers Network for patients with suspected Primary Immunodeficiency but no genetic diagnosis. Since 2019, it has sequenced over 6,500 patients and identified over 52,000 genetic variants, with 38% of sequenced patients experiencing a change in treatment and 35% a change in outcome.
• Jeffrey Modell Centers Network (JMCN) A global network of diagnostic and research centers for Primary Immunodeficiency providing expert diagnosis, treatment, and referral services. Centers have access to JMF programs including Jeffrey's Insights genetic sequencing and other grants.
• WinMD Grant Travel funding grant for medical students, fellows, researchers, and physicians to travel to global meetings focused on PI and immunology. Maximum $2,500 USD for international travel, $1,000 USD for domestic travel.
• WinRN Grant Travel grant for nurses to travel to global meetings focused on PI and immunology. Maximum $1,500 USD for international travel, $1,000 USD for domestic travel.
• WIN Grant Financial support grants to global patient organizations that unite and strengthen the PI community. Awards up to $5,000 for PI-focused events and activities including educational materials, family days, advocacy efforts, and awareness activities. Awarded in more than 46 countries to date.
• Roots & Wings Travel assistance program for families of children diagnosed with life-threatening Primary Immunodeficiency who require lifesaving medical care far from home. Offers travel assistance (Wings) and support for related expenses (Roots).
• KIDS DAY All-expenses-paid day of sharing, caring, and fun for patients, families, and care teams within the Jeffrey Modell Centers Network. Nearly 900 KIDS DAYS hosted to date. Past events held at aquariums, zoos, museums, movie theaters, and baseball fields.
• JMF Speaker Series Global virtual speaker series featuring expert speakers on immunology and genetic research to promote education, collaboration, and new treatment developments for Primary Immunodeficiency. CME-accredited through Columbia University.
• World PI Week Annual global celebration (April 22-29) to raise awareness about Primary Immunodeficiency. Includes campaign reports from 2013-2023 and engages physicians, nurses, researchers, patient groups, families, and individuals living with PI.
• Find an Expert Immunologist Online directory tool to find expert immunologists by country to connect patients with specialists worldwide.
• Newborn Screening Advocacy for SCID Advocacy initiative for newborn screening for SCID (Severe Combined Immunodeficiency) worldwide. SCID screening implemented nationwide in the US since 2018 across all 50 states, Guam, Washington D.C., Puerto Rico, and Navajo Nation. Screening now active in 40 countries with 27 conducting population-level screening.
• Spy the 10 Warning Signs Game Interactive game for children to learn about the 10 Warning Signs of Primary Immunodeficiency. Available in English, Spanish, French, Polish, Portuguese, and Swedish.

Quantifiable outcome

• 38% of patients had a change in treatment and 35% had a change in outcome after receiving genetic sequencing through Jeffrey's Insights
• +5 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

23 partnerships are on record, tiered flagship, core and minor.

• Bill & Melinda Gates FoundationflagshipStrategic or Co-development Partner · 28 November 2012JMF and the Gates Foundation announced a collaboration to eradicate polio worldwide. This strategic partnership leveraged JMF's expertise in immunology and newborn screening with the Gates Foundation's global health infrastructure and funding capacity to support polio eradication efforts.
• National Institutes of Health (NIH)coreStrategic or Co-development PartnerJMF collaborates with NIH through Dr. Luigi Notarangelo (Chief, Immune Deficiency Genetics Section, NIAID) who appears as a speaker in the JMF Speaker Series. NIH's research expertise supports JMF's educational mission and genetic sequencing program.
• National Institute of Allergy and Infectious Diseases (NIAID)coreStrategic or Co-development PartnerNIAID, part of NIH, collaborates with JMF on immunology research and education. Dr. Luigi Notarangelo serves as Chief of the Immune Deficiency Genetics Section at NIAID and participates in JMF Speaker Series events.
• Centers for Disease Control and Prevention (CDC)coreStrategic or Co-development PartnerJMF works with CDC on public health initiatives related to Primary Immunodeficiency awareness and newborn screening advocacy.
• Health Resources and Services Administration (HRSA)coreStrategic or Co-development PartnerJMF partners with HRSA to advance newborn screening initiatives and improve access to care for Primary Immunodeficiency patients.
• National Human Genome Research Institute (NHGRI)coreStrategic or Co-development PartnerNHGRI supports JMF's Jeffrey's Insights genetic sequencing program, which leverages genomic research to accelerate PI diagnosis.
• European Society for Immunodeficiencies (ESID)coreStrategic or Co-development PartnerESID is listed as a PI Society partner, collaborating on professional education, research, and awareness initiatives for Primary Immunodeficiency across Europe.
• International Patient Organization for Primary Immunodeficiencies (IPOPI)coreStrategic or Co-development PartnerIPOPI is listed as a PI Society partner, working with JMF to advocate for PI patients globally and support patient organization capacity building.
• Latin American Society for Immunodeficiencies (LASID)coreStrategic or Co-development PartnerLASID collaborates with JMF on PI education, research, and regional advocacy across Latin America, with JMF's WIN grants supporting patient organizations in the region.
• African Society for Immunodeficiencies (ASID)coreStrategic or Co-development PartnerASID partners with JMF to advance PI awareness and care in Africa. JMF has previously challenged African physicians from 17 countries to implement regional 'Call to Action' initiatives.
• Clinical Immunology Society (CIS)coreStrategic or Co-development PartnerCIS partners with JMF on professional education, including joint providership of CME-accredited JMF Speaker Series events. CIS and JMF also co-announced the Vicki Modell Award in December 2025.
• International Nursing Group for Immunodeficiencies (INGID)coreStrategic or Co-development PartnerINGID collaborates with JMF on nursing education and professional development for PI care, complementing JMF's WinRN travel grant program.
• CSL BehringcoreStrategic or Co-development PartnerCSL Behring is a pharmaceutical partner providing immunoglobulin therapies for PI patients. The company supports JMF's mission through Hizentra patient support programs, the Vita storytelling hub, and the CSL NOW mobile app.
• TakedacoreStrategic or Co-development PartnerTakeda is a pharmaceutical partner providing treatments for PI patients. Takeda has announced U.S. availability updates for GAMMAGARD LIQUID ERC and supports JMF's patient resources through MyIgSource.com.
• GrifolscoreStrategic or Co-development PartnerGrifols is a pharmaceutical partner providing Gamunex and Xembify immunoglobulin products. The company supports JMF through co-pay assistance programs (Gamunex Connexions, Xembify Connexions) and the Grifols ASPIRE Award.
• ADMA BiologicsminorStrategic or Co-development PartnerADMA Biologics provides ASCENIV (immune globulin intravenous) treatment for PI patients, with an associated patient support program (ADMA ADvantage).
• Rocket PharmaceuticalscoreStrategic or Co-development PartnerRocket Pharmaceuticals received FDA approval for KRESLADI, the first approved gene therapy for pediatric LAD-I patients. JMF supports gene therapy advancement for PI through advocacy and awareness, with Rocket as a key pharma partner.
• PharmingcoreStrategic or Co-development PartnerPharming is a pharmaceutical partner that received FDA approval for Joenja to treat APDS and announced new Phase II clinical trial of Leniolisib for Primary Immunodeficiencies. JMF supports awareness and patient access initiatives.
• X4 PharmaceuticalscoreStrategic or Co-development PartnerX4 Pharmaceuticals received FDA approval for XOLREMDI (mavorixafor) for WHIM syndrome patients. JMF supports awareness and patient access for rare immunodeficiency treatments.
• Chiesi Global Rare DiseasescoreStrategic or Co-development PartnerChiesi Global Rare Diseases announced support for JMF's 'Jeffrey's Insights' global genetic sequencing initiative, helping expand no-cost genetic testing access for PI patients.
• Columbia University Vagelos College of Physicians and SurgeonscoreStrategic or Co-development PartnerColumbia University is the joint CME accreditation provider for the JMF Speaker Series through ACCME. The collaboration enables physicians to earn AMA PRA Category 1 Credits for participating in JMF educational events.
• Baylor College of Medicine and Texas Children's HospitalcoreStrategic or Co-development PartnerDr. Lisa Forbes Satter from Baylor College of Medicine and Texas Children's Hospital serves as moderator for JMF Speaker Series events, contributing clinical expertise in PI.
• Jeffrey Modell Centers Network (JMCN)flagshipStrategic or Co-development PartnerJMCN is JMF's flagship network of diagnostic and research centers for PI, spanning multiple continents. Centers provide expert diagnosis and treatment and have access to JMF programs including Jeffrey's Insights and JMF grants.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Global Genes: Rare disease advocacy organization supporting under-represented patient communities with awareness, education, and connection resources. Comparable mission model to JMF but operating across many rare diseases rather than PI focus.
• European Society for Immunodeficiencies (ESID): European professional society for clinicians and researchers working in immunodeficiency. JMF's named PI Society partner with overlapping scope on professional education, research, and clinical best-practice dissemination.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy foundation focused on accelerating biotech innovation for rare diseases. Comparable advocacy and policy orientation to JMF, though broader in disease scope.
• National Organization for Rare Disorders (NORD): US umbrella organization for rare disease patient advocacy groups. Operates at a broader policy and advocacy level that JMF engages with via the rare disease ecosystem, though NORD is not PI-specific.
• Cystic Fibrosis Foundation: Established US rare-disease nonprofit driving research, drug development, and patient care for cystic fibrosis. Benchmark peer for rare disease foundation operating model, drug pipeline partnerships, and scale of grant deployment.
• Clinical Immunology Society (CIS): North American professional society for clinical immunologists, partnering with JMF on CME-accredited Speaker Series and PI professional education. Comparable audience (clinical immunologists) but professional-society rather than patient-advocacy orientation.

Direct peers

• SCID Angels for Life Foundation: SCID-specific advocacy foundation supporting families affected by Severe Combined Immunodeficiency. Closest peer in JMF's flagship SCID newborn screening focus area, with overlapping mission around early diagnosis and family support.
• Immune Deficiency Foundation: The largest US-based patient organization dedicated exclusively to Primary Immunodeficiency, focused on patient support, education, and advocacy. JMF's most direct US peer given shared PI disease focus and overlapping patient/professional audience.
• International Patient Organization for Primary Immunodeficiencies (IPOPI): Global umbrella organization for national PI patient organizations, providing JMF with an international peer-level alignment on advocacy, awareness campaigns, and policy engagement for the PI community.

Others

• American Academy of Allergy, Asthma & Immunology (AAAAI): Major US professional medical organization for allergists and clinical immunologists. Relevant as the broader medical specialty home for JMF's clinician audience, though not a direct competitor or partner.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat6 records

Key risks4 records

Key highlights5 records

Customer concentration

• Facebookfacebook.com/JMFworld
• Instagraminstagram.com/info4pi

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Jeffrey Modell Foundation