What IgA Nephropathy Foundation does

The IgA Nephropathy Foundation is a 501(c)(3) nonprofit patient advocacy organization founded in 2004 and headquartered in Wall Township, New Jersey, dedicated to finding a cure for IgA Nephropathy (IgAN), a rare autoimmune glomerular kidney disease that is the most common primary glomerular disease worldwide and progresses to end-stage kidney disease in 20–40% of patients. Co-founded by Executive Director Bonnie Schneider, the Foundation serves IgAN patients across the disease continuum, their caregivers and family members, nephrologists and other healthcare providers, and patient advocates. Its programs are organized around four pillars: research, education, support, and advocacy.

Its core product and research asset is the IgAN Hope Patient Registry, a HIPAA-compliant global registry launched in July 2025 at SPARK Chicago that captures diagnosis, treatment, lab values, quality-of-life, dietary, and mental-health data, with optional EHR integration. Surrounding products include the IgAN+ mobile application for iOS and Android, the IgAN Care nephrology provider finder, the IgAN Cookbook and recipe library, a Clinical Trials Directory, an HCP Library for clinician education, and a Patient Aid financial-assistance program. Community infrastructure is delivered through the SPARK annual patient conference, the IgAN Ambassador Program, the Go Global Network for international audiences, the Asian IgAN Awareness Initiative, and structured support groups. Content is distributed via blog, email newsletter, Facebook, X/Twitter, Instagram, YouTube, in-person Hill Days on Capitol Hill, and recognition-anchored appearances at ASN Kidney Week.

The Foundation operates a donation-and-sponsorship revenue model without commercial pricing. Income is generated from individual donations processed through NeonCRM, event- and community-led fundraising (including ambassador-hosted restaurant nights), membership enrollment, and corporate sponsorship from pharmaceutical companies developing IgAN therapies—Vertex Pharmaceuticals (Emerald sponsor for Kidney Month 2026), Calliditas Therapeutics (Friend sponsor), Novartis, Vera Therapeutics, and Takeda Pharmaceuticals (Emerging Therapies Forum). Additional programmatic funding has come from the Chan Zuckerberg Initiative, which underwrote the Foundation's first research poster at ASN Kidney Week 2025. No revenue is earned from program participants; all patient-facing services are free of charge.

Name

IgA Nephropathy Foundation

Legal name

IgA Nephropathy Foundation

Website

https://igan.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

The IgA Nephropathy Foundation is a 501(c)(3) nonprofit that provides education, support, advocacy, and a global patient registry for individuals affected by IgA Nephropathy, a rare autoimmune kidney disease, and their caregivers.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Rare disease advocacy
• Kidney disease support
• Patient education resources
• Nephrology community programs
• Patient registry research

Headquarters

HQ city

Township Of Washington

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The Foundation generates revenue primarily through donations from individuals, corporate sponsors, and fundraising campaigns. This includes direct donations via its website portal (igan.app.neoncrm.com), event-based fundraising, and community-driven initiatives such as restaurant fundraisers hosted by patient ambassadors.
2. Corporate Sponsorship: Pharmaceutical companies and healthcare organizations sponsor Foundation programs, events, and campaigns. Sponsorship tiers include Emerald, Friend, and other levels. Sponsors include Vertex Pharmaceuticals (Emerald), Calliditas Therapeutics (Friend), Novartis, Vera Therapeutics, and Takeda Pharmaceuticals.
3. Membership Dues: The Foundation offers membership enrollment, suggesting membership-based support. Membership provides access to resources, community, and advocacy tools.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels10 records

Core offering

The IgA Nephropathy Foundation is a 501(c)(3) nonprofit patient advocacy organization that delivers education, support, research, and advocacy resources to individuals affected by IgA Nephropathy, a rare autoimmune kidney disease. Its offerings include the IgAN Hope Patient Registry, the IgAN+ mobile app, the SPARK annual conference, the IgAN Care provider finder, nutrition and recipe resources, ambassador and caregiver programs, and federal legislative advocacy. All programs are provided free of charge to patients and caregivers and funded primarily through donations and corporate sponsorships.

Product overview

The IgA Nephropathy Foundation offers a portfolio of patient-focused programs and resources organized around four pillars: education, support, research, and advocacy. The central product is the IgAN Hope Patient Registry—a global database enabling patients with IgA Nephropathy and IgA Vasculitis to contribute health data, connect Electronic Health Records, and support research acceleration. This connects to the Foundation's digital ecosystem: the IgAN+ mobile app (iOS/Android) for patient self-management, the IgAN Cookbook and recipe library for kidney-friendly nutrition, the IgAN Care nephrology provider finder, and the IgAN Risk Quiz for awareness. Community and advocacy are served through the IgAN Ambassador Program, the IgAN Go Global Network for international reach, the annual SPARK Conference for patient education, IgA Nephropathy Day and Kidney Health + Nutrition Month awareness campaigns, and a Patient Aid financial assistance program. Research infrastructure includes a Clinical Trials Directory, an HCP Library for healthcare professional education, and published research articles. The portfolio is completed by Faces of IgAN storytelling, mental health resources, pregnancy and family planning guides, caregiver support, and an IgAN FAQ.

Differentiator

Problem solved

Functional benefit

Brands

• IgAN Hope Patient Registry: A global registry for individuals with IgA Nephropathy and IgA Vasculitis to drive research, accelerate treatments, and improve patient outcomes.
• IgAN Go Global Network
• SPARK Conference
• IgAN+ App
• IgAN Ambassador Program

Products and services

• IgAN Hope Patient Registry A global, HIPAA-compliant patient registry for individuals with IgA Nephropathy and IgA Vasculitis. Participants contribute anonymized health data including diagnosis, symptoms, treatments, lab values, quality of life, diet, and mental health information, and can connect their Electronic Health Record. The registry drives research and accelerates treatment development.
• IgAN+ Mobile App Mobile application for IgAN patients providing nutrition guides, kidney-friendly recipes, self-management tools, and community resources. Available on iOS and Android via the Foundation's app pages.
• SPARK Conference The only conference dedicated exclusively to IgA Nephropathy patients and their caregivers, featuring education, research updates, and community connection. Annual event with registration managed through the dedicated SPARK website.
• IgANCare Provider Finder A nephrology provider finder that allows IgAN patients to locate healthcare providers specialized in their disease. Patients can also encourage their provider to join or nominate a provider for inclusion in the network.
• IgAN Cookbook Kidney-friendly recipe collection providing meals tailored for individuals managing IgA Nephropathy, with emphasis on low-sodium, low-potassium, and kidney-healthy ingredients. Developed in partnership with Cukebook (Culinary Nutrition for Kidneys, Inc.).
• IgAN Risk Quiz

Quantifiable outcome

• 20-40% of IgAN patients develop end-stage kidney disease requiring dialysis or transplant
• +2 more outcomes

Named customers1 record

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Four partnerships are on record, tiered minor and major.

• Pittsburgh SteelersminorGTM or Marketing Partner · 1 December 2025The Pittsburgh Steelers partnered with the IgAN Foundation and Hayden Shock (kidney transplant recipient) to support the '13 for LIFE' organ donation awareness campaign on Capitol Hill, raising awareness about the organ shortage affecting over 103,000 people in the U.S.
• Cukebook (Culinary Nutrition for Kidneys, Inc.)majorStrategic or Co-development PartnerCukebook, a nutrition-forward nonprofit backed by 501c3 Culinary Nutrition for Kidneys, Inc., provides recipes, guides, and nutrition tools for people living with chronic kidney disease. The Foundation's recipe section and nutrition content extensively features Cukebook resources, with Lauren Levy serving as both a Foundation contributor and Director at Cukebook.
• American Society of Nephrology (ASN)majorStrategic or Co-development PartnerASN hosts Kidney Week, at which the Foundation presents research, delivers lectureships, and hosts forums. The Foundation's Bonnie Schneider delivered the Celeste Castillo Lee Endowed Lectureship at ASN Kidney Week 2025.
• Rare Disease DayminorGTM or Marketing PartnerThe Foundation participates in Rare Disease Day (hosted by rarediseases.org) to raise awareness for IgA Nephropathy as a rare kidney disease.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• NephCure Kidney International: Rare kidney disease-focused nonprofit historically centered on nephrotic syndrome and FSGS but expanding to include IgAN. Closest direct peer in mission, structure, and patient registry focus.
• PKD Foundation: Patient advocacy organization for polycystic kidney disease, another rare genetic kidney disease. Closely comparable as a disease-specific kidney nonprofit operating a patient registry, research grants, and conferences.
• Alport Syndrome Foundation: Rare hereditary kidney disease foundation providing patient education, community support, and research advocacy. Highly comparable small-team, patient-led structure and mission to accelerate treatments for a rare kidney condition.

Broad incumbents

• National Kidney Foundation: The largest U.S. kidney disease nonprofit, funding research, patient education, and advocacy across all kidney conditions including IgAN. Highly comparable as a patient-advocacy peer but operates at a much broader scale and lacks IgAN-specific focus.
• American Kidney Fund: National nonprofit providing financial assistance, education, and advocacy for kidney patients. Directly comparable in mission (patient aid, education, advocacy) and overlapping disease scope, though much larger and not IgAN-focused.
• American Association of Kidney Patients (AAKP): Independent kidney patient organization focused on advocacy, education, and patient engagement across kidney diseases. Comparable as a kidney-specific patient advocacy peer, including Hill Day-style advocacy and patient ambassadorship.
• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization that supports patient organizations including IgAN-focused foundations. Highly comparable advocacy mission and patient community focus, but operates at a much larger scale across all rare diseases.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit advancing legislative and regulatory issues for rare disease patient communities. Comparable advocacy focus, particularly around federal policy work that complements the IgAN Foundation's Hill Day efforts.

Others

• CureGN (Cure Glomerulonephropathy Network): Multi-center NIH-funded research consortium studying glomerular diseases including IgAN. Comparable registry/research mission and serves as both a potential research partner and indirect peer for patient data infrastructure.
• Kidney Health Initiative: Public-private partnership between ASN and FDA focused on kidney disease innovation. Comparable as a research/advocacy ecosystem stakeholder and the Foundation collaborates with it through ASN Kidney Week.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/iganfoundation
• YouTubeyoutube.com/channel/UCw96h4gvKITgs3rf8tpfOcg
• Facebookfacebook.com/IGANFoundation
• Instagraminstagram.com/iganfoundation
• LinkedInlinkedin.com/company/iganfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Subsidiaries4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about IgA Nephropathy Foundation