Oxalosis & Hyperoxaluria Foundation

What Oxalosis & Hyperoxaluria Foundation does

The Oxalosis & Hyperoxaluria Foundation (OHF) is a US-based nonprofit patient advocacy and research foundation founded in 1989 and headquartered in New Paltz, New York. It serves the global hyperoxaluria community — a rare metabolic kidney disease population — through five operational pillars: (1) the OHF Patient Registry, which collects real-world data from enrolled patients; (2) the OHF Care Center Network, a network of 6 multidisciplinary care centers delivering standardized expert care; (3) research grant funding, with more than 60 grants and $40M+ raised and committed cumulatively since founding; (4) education and patient support assets including the proprietary Oxalate Food Content Database, a children's video series (PH1 of a Kind), and multilingual resources in six languages; and (5) convening events such as the annual Patient & Family Summit and the International Hyperoxaluria Workshop (15th edition scheduled June 26–27, 2026 in Prague).

OHF's core technology footprint is built on a patient registry, an oxalate content database developed in collaboration with nutrition experts and hyperoxaluria specialists, and a multilingual website platform available across 20+ countries. The organization serves four primary stakeholder groups: patients with hyperoxaluria, caregivers and family members, healthcare professionals (clinicians, nephrologists, urologists), and researchers/scientists. It does not sell products or charge for services; all resources are free to patients and families.

Revenue is generated entirely through donations and corporate sponsorships. Individual giving flows through one-time and monthly donation programs plus community-led fundraising; institutional revenue comes from the OHF Corporate Alliance, a coalition of pharmaceutical and biotechnology sponsors including Novo Nordisk, Alnylam, BioCodex, BioMarin, Arbor Biotech, YolTech, and Meta, which fund events, travel grants, and research programs. Additional partnership revenue comes from patient-assistance program partners (American Kidney Fund, HealthWell Foundation) and global patient-organization allies. OHF employs between 11 and 50 people, is led by Executive Director Kim Hollander and Operations Coordinator Julie Bertarelli, and is governed by a volunteer Board of Directors with scientific guidance from a Scientific Advisory Board and Council of 50+ international experts.

Name

Oxalosis & Hyperoxaluria Foundation

Legal name

Oxalosis & Hyperoxaluria Foundation

Website

https://ohf.org

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

11–50 employees

Short description

The Oxalosis & Hyperoxaluria Foundation (OHF) is a US-based nonprofit founded in 1989 that serves the global hyperoxaluria patient community through a patient registry, a 6-site Care Center Network, $40M+ in research grant funding, education resources, and an annual International Hyperoxaluria Workshop, supported by donations and a pharma/biotech Corporate Alliance.

Ownership category

akta.pro rank

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: OHF generates revenue through one-time and monthly donations from individuals, as well as fundraising campaigns and events. The foundation offers monthly supporter programs and fundraising guides for community members.
2. Corporate Sponsorships and Alliance: Pharmaceutical and biotech companies in the Corporate Alliance sponsor events, travel grants, and research programs. Sponsors include Novo Nordisk, Alnylam, BioCodex, BioMarin, Arbor Biotech, Meta, and YolTech.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

OHF is a nonprofit patient advocacy foundation that advances diagnosis, expert care, research, and support for people with hyperoxaluria. It operates a patient registry, a Care Center Network of 6 multidisciplinary clinics, an oxalate food content database, free genetic testing, research grants, educational resources, and community events (Patient & Family Summit, International Hyperoxaluria Workshop) for patients, caregivers, clinicians, and researchers across 40+ countries.

Product overview

The Oxalosis & Hyperoxaluria Foundation (OHF) operates as a nonprofit patient advocacy and research support organization rather than a technology product company. OHF provides a coordinated suite of patient-focused services including the OHF Patient Registry (advancing research through patient participation), the OHF Care Center Network (6 multidisciplinary care centers), the Oxalate Food Content Database (dietary guidance tool), Research Grants & Funding programs ($50M+ invested), Clinical Trials information, Children's Video Series (PH1 of a Kind in multiple languages), Patient Assistance Programs, Free Genetic Testing, the International Hyperoxaluria Workshop, and the annual Patient & Family Summit. OHF also facilitates the Global Alliance connecting patient organizations, advocates, clinicians, and researchers across 40+ countries. These services work together to advance diagnosis, expert care, research, and support for the hyperoxaluria community.

Differentiator

Problem solved

Functional benefit

Products and services

• OHF Patient Registry A patient registry enabling hyperoxaluria patients to contribute real-world data that researchers use to better understand the disease and accelerate future treatments.
• OHF Care Center Network A network of 6 care centers providing expert, standardized multidisciplinary care guided by OHF protocols for patients with hyperoxaluria.
• Oxalate Food Content Database A comprehensive database of oxalate content levels in common foods and beverages, including vegetables, fruits, grains, proteins, dairy, fats, beverages, sweets, spices, commercial products, and supplements, for dietary management of hyperoxaluria.
• Clinical Trials Information Hub Centralized information resources about ongoing clinical trials for hyperoxaluria treatments, helping patients and clinicians identify trial opportunities.
• Research Grants & Funding Program Competitive research grants funding innovative science and accelerating discovery in hyperoxaluria, with $50M+ invested in research and programs and 60+ grants funded since 1989.
• Children's Video Series (PH1 of a Kind) A children's educational video series following characters living with primary hyperoxaluria type 1, helping children and families understand the condition in multiple languages.
• Patient Assistance Programs Financial assistance programs delivered with partner organizations (American Kidney Fund, HealthWell Foundation) to help patients cover prescription co-insurance, copayments, deductibles, premiums, and other healthcare costs.
• Free Genetic Testing Program A no-cost genetic testing program enabling precise diagnosis of primary hyperoxaluria for eligible patients worldwide.
• International Hyperoxaluria Workshop The world's largest hyperoxaluria scientific event, held annually (15th edition on June 26–27 in Prague), bringing together clinicians, researchers, and industry leaders for scientific sessions, poster exhibitions, and expert dialogue on hyperoxaluria challenges.
• Patient & Family Summit An annual in-person community meeting connecting patients, families, and clinical experts for networking, education, and support, with travel grant programs for advocates.
• Global Alliance A worldwide network uniting patient organizations, advocates, physicians, and researchers to improve outcomes and expand access to care across 40+ countries.

Quantifiable outcome

• 2 approved therapies approved that OHF helped enable through patient advocacy and research support
• +2 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

14 partnerships are on record, tiered core and minor.

• Novo NordiskcoreGTM or Marketing PartnerPharmaceutical partner in OHF Corporate Alliance supporting patient education, community building, and improved access to approved treatments for hyperoxaluria.
• AlnylamcoreGTM or Marketing PartnerBiotechnology partner in OHF Corporate Alliance, evidenced by event sponsorship of Patient & Family Summit 2025.
• Arbor BiotechcoreGTM or Marketing PartnerBiotechnology partner in Corporate Alliance, appearing as sponsor and partner in OHF events and programs.
• BioCodexcoreGTM or Marketing PartnerCorporate Alliance member supporting OHF's mission and patient community initiatives.
• BioMarin (BMRN)coreGTM or Marketing PartnerCorporate Alliance member and biotechnology partner in hyperoxaluria space.
• YolTechcoreGTM or Marketing PartnerEmerging biotech partner appearing in OHF corporate alliance communications.
• American Kidney FundcoreGTM or Marketing PartnerPatient assistance program partner helping financially support patients when insurance is insufficient, covering co-pays, deductibles, and other healthcare expenses.
• HealthWell FoundationcoreGTM or Marketing PartnerPatient assistance program partner providing financial assistance for prescription medication co-insurance costs and other healthcare expenses.
• Kidney Fund (American Kidney Fund)coreGTM or Marketing PartnerAdditional patient assistance partner helping patients access treatments and manage healthcare costs.
• Metabolic Support UKminorGTM or Marketing PartnerUK-based patient organization partner providing metabolic condition support and resources.
• Rare Disease UnitedminorGTM or Marketing PartnerPatient advocacy organization partner in rare disease awareness and support.
• Rare Kidney Stone ConsortiumminorGTM or Marketing PartnerClinical and research network partner focusing on rare kidney stone conditions including hyperoxaluria.
• PH Autoayuda (Germany)minorGTM or Marketing PartnerGerman patient self-help organization for primary hyperoxaluria providing peer support.
• APHES (Spain)minorGTM or Marketing PartnerSpanish patient association providing hyperoxaluria support and advocacy in Spain.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• American Kidney Fund: Major US kidney patient assistance and advocacy organization. Comparable to OHF in providing patient financial assistance programs for treatment costs, healthcare professional resources, and serving as a connector between kidney patients and clinical care.
• National Kidney Foundation: Large US kidney disease advocacy and research organization. While OHF focuses narrowly on hyperoxaluria, NKF addresses the broader kidney disease landscape that includes hyperoxaluria patients, offering overlapping patient education, research funding, and clinical resources.
• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization in the US. NORD operates as a federation of patient advocacy groups and provides similar services to OHF (research grants, patient assistance, advocacy, global alliance) at a broader rare disease scale.

Regional players

• EURORDIS - Rare Diseases Europe: European federation of rare disease patient organizations. Comparable to OHF's Global Alliance in mission and structure, providing advocacy, capacity building, and community connection across rare disease patient groups in 40+ European countries.

Direct peers

• Alport Syndrome Foundation: Rare inherited kidney disease patient advocacy organization. Shares OHF's operating model of providing patient support, scientific research funding, registry infrastructure, and global collaboration among patients, clinicians, and researchers.
• NephCure Kidney International: Rare kidney disease patient advocacy foundation focused on nephrotic syndrome. Operates a similar model to OHF with research grants, patient support, education, and pharma partnerships, making it a directly comparable rare kidney disease peer.
• Rare Kidney Stone Consortium: Clinical and research consortium focused on rare kidney stone conditions including hyperoxaluria. Directly overlaps with OHF's research focus and is a listed OHF partner, making it a natural peer in the rare hyperoxaluria research ecosystem.
• HealthWell Foundation: Independent nonprofit providing financial assistance for prescription medication co-insurance and other healthcare expenses. Operates as a direct partner to OHF's patient assistance program and shares the rare disease patient financial support model.
• Cystinosis Research Network: Small rare metabolic disease patient advocacy foundation with similar operating model to OHF: research grants, family support, scientific conference, and pharma partnerships. Highly comparable in scale and mission specificity.
• Polycystic Kidney Disease Foundation (PKDF): Leading patient advocacy and research foundation for polycystic kidney disease. Comparable to OHF in mission, structure, and core services: research funding, patient registry, care center network, pharma partnerships, and global community engagement.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/ohftweet
• YouTubeyoutube.com/channel/UCglmxVYeF-MoWdvD9F8vDbg
• Facebookfacebook.com/theohf
• LinkedInlinkedin.com/company/oxalosis-and-hyperoxaluria-foundation
• Instagraminstagram.com/ohfoundation

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 Oxalosis & Hyperoxaluria Foundation