Citrin Foundation

What Citrin Foundation does

Citrin Foundation is a non-profit, research-driven, patient-centered organization founded in 2016 to find effective treatments and a cure for citrin deficiency, an autosomal recessive, monogenetic metabolic disorder caused by mutations in the SLC25A13 gene that encodes the mitochondrial aspartate-glutamate carrier. The foundation operates through two independent legal entities — Citrin Foundation Ltd. in Singapore (registered charity under the Charities Act 1994, company no. 201635027D) and Citrin Foundation Ltd. in England and Wales (Charity Registration Number 1216137, company no. 15940318) — co-founded by Barbara Yu and governed by a Scientific Supervisory Board chaired by Nobel Laureate Sir John Walker.

Its core activities are grant-making and convening rather than technology development. It funds basic science, clinical, and translational research projects across a global network of academic and industry partners, including a Citrin Deficiency Center of Excellence at Kumamoto University, the University of Zurich–Citrin Foundation UCD Translational Centre (established May 2025), a Duke-NUS Medical School collaboration, and a research partnership with ChromaDex on nicotinamide riboside. The foundation also maintains a global patient registry, a clinician directory spanning 15 countries, peer-reviewed publications and treatment guidelines, triennial international symposiums, and patient-facing educational resources (including flyers in English, German, and Korean).

The foundation's business model is charitable: it is funded by donations and grants, does not sell products or services, and provides its patient support, research funding, and informational resources free of charge. It has committed substantial financial resources over a 10-year horizon to advance its mission. Revenue is not publicly disclosed; the team is small (1-10 employees) and operates from offices in Singapore (Suntec Tower Four) and London (Kensington High Street). Citrin Foundation's primary beneficiaries are citrin deficiency patients and their families, with secondary stakeholders including scientific researchers, clinicians, dietitians, biotech firms, and pharmaceutical companies working in the rare metabolic disease space.

Name

Citrin Foundation

Legal name

Citrin Foundation Ltd.

Website

https://citrinfoundation.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

1–10 employees

Short description

Citrin Foundation is a non-profit founded in 2016 that funds research, convenes a global scientific network, and supports patients with citrin deficiency, a rare inherited metabolic disorder. It operates via charitable donations and grants across Singapore, the UK, and 16+ countries.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Public Charities & Grantmaking Intermediaries (BPAGAKAE)

Keywords

• Rare disease research
• Patient registry services
• Metabolic disorder foundation
• Medical research funding
• Patient support services

Headquarters

HQ city

Singapore

HQ country

Singapore

HQ region

Asia

Offices2 records

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Grants: As a non-profit foundation registered as a charity in both the UK and Singapore, Citrin Foundation operates through donations and grants to fund research projects, patient support initiatives, and professional network activities. The foundation has committed substantial financial resources to achieve its aims over the next 10 years.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

Citrin Foundation is a non-profit foundation that funds and coordinates scientific research on citrin deficiency (a rare monogenetic metabolic disorder) and provides lifelong support to patients and families globally. It operates a Patient Registry, a Professional Network of clinicians across multiple countries, a Clinician Directory, a research funding programme covering basic science, clinical and therapy projects, and publishes treatment guidelines and educational resources. All activities and resources are provided free of charge and supported by charitable donations and grants.

Product overview

Citrin Foundation is a non-profit research-driven patient-centered organization focused on citrin deficiency, a monogenetic metabolic disorder and urea cycle disorder. The foundation does not offer commercial technology products; instead, it provides educational resources, patient support services, and research funding. Key offerings include: a Patient Registry (accessible at patient.citrinfoundation.org) for patient community engagement; a Professional Network connecting physicians and clinicians specializing in citrin deficiency; a Clinician Directory listing specialists across multiple countries; published medical guidelines and research publications; newsletters for professional and patient audiences; educational resources on dietary management including MCT oil and formula recommendations; and organizing global symposiums and events for research collaboration. The foundation funds basic science, clinical, and therapy research projects to develop treatments and ultimately find a cure for citrin deficiency.

Differentiator

Problem solved

Functional benefit

Products and services

• Citrin Patient Registry A global patient registry hosted at patient.citrinfoundation.org that enables patients with citrin deficiency and their families to enrol, contribute data, connect with the community, and support research studies including the Citrin Foundation Global Omics Study and the natural history of citrin deficiency. Free of charge; available globally.
• Citrin Foundation Professional Network and Clinician Directory A registration-based global network of physicians, clinicians and dietitians specialising in citrin deficiency, paired with a public-facing Clinician Directory that helps patients locate specialists by country. Free to join for qualified professionals.
• Citrin Foundation Research Funding Opportunities Grants and funding calls for research projects on citrin deficiency across three tracks: Basic Science, Clinical, and Therapies (including gene editing, NAD+ modulation, and amino acid delivery). Open to qualified academic and clinical researchers globally, with awarded projects published on the foundation's website.
• Citrin Foundation Global Omics Study An ongoing foundation-funded clinical omics research study aggregating multi-omic data from citrin deficiency patients worldwide to characterise disease biology, identify biomarkers, and inform therapeutic development. Hosted as part of the foundation's clinical research programme.
• Citrin Foundation Global Symposium An in-person international symposium (held since 2019) bringing together clinicians, scientists, dietitians, biotech representatives, patients and families from multiple countries for presentations on biochemical mechanisms, diagnostics, novel models and therapeutic strategies in citrin deficiency.
• Patient Information Resources and Flyers Multilingual patient education resources covering diagnosis, dietary management, MCT oil, formulas, food preferences and warning signs of citrin deficiency. Patient flyers are available in English, German and Korean on the foundation website. Free downloadable PDFs.
• Citrin Foundation Quarterly Newsletter A quarterly email newsletter distributed to professional and patient audiences featuring updates on scientific research, publications, conferences and patient engagement. Editions produced since at least 2023.
• Citrin Deficiency Medical Treatment Guideline Foundation-published treatment guidelines and therapeutic procedures for citrin deficiency, made publicly available to clinicians, patients and families to standardise care.
• Citrin Deficiency Book A reference book on citrin deficiency developed by the foundation and made available via its Professional Network to support clinician education about the disease.
• Citrin Deficiency Center of Excellence (Kumamoto University) A foundation-funded Center of Excellence based at Kumamoto University (Japan) dedicated to citrin deficiency diagnosis, monitoring, and treatment research. Functions as a foundation-designated clinical and research node.

Quantifiable outcome

• Patient energy intake at 115% of standard Japanese diet with higher protein and fat, lower carbohydrate ratios, helping prevent CTLN2 onset
• +1 more outcomes

Named customers1 record

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core.

• ChromaDex Corp. (CERP Program)coreStrategic or Co-development Partner · 30 March 2021Citrin Foundation collaborates with ChromaDex External Research Program (CERP) on a global research initiative to study the effects of Niagen® nicotinamide riboside (NR) on citrin deficiency. The foundation funds preclinical and clinical studies to explore the potential impact of increased NAD+ levels on patients with citrin deficiency, in partnership with leading research institutions. Sir John Walker, Nobel Laureate and Chair of the foundation's Scientific Supervisory Board, serves on ChromaDex's Scientific Advisory Board.
• Duke-NUS Medical School (Singapore)coreStrategic or Co-development Partner · 30 March 2021Professor Paul M. Yen and scientists at Duke-NUS Medical School in Singapore lead preclinical studies examining the ability of nicotinamide riboside (NR) to impact mitochondrial function, lipid accumulation, inflammation, and fibrosis in the liver using preclinical models of citrin deficiency. This research is funded by the Citrin Foundation in collaboration with ChromaDex.
• University of Zurich (Paediatric Hospital)coreStrategic or Co-development PartnerIn May 2025, Citrin Foundation and the University of Zurich announced the establishment of the world's first centre dedicated to translational research on urea cycle disorders (UCDs). The University of Zurich–Citrin Foundation UCD Translational Centre represents a landmark collaboration advancing research into citrin deficiency and related conditions.
• University of Cambridge (Møller Institute)coreStrategic or Co-development PartnerCitrin Foundation held its third in-person Global Symposium from June 9th to 11th, 2025 at the Møller Institute, University of Cambridge. Over 80 participants including clinicians, scientists, dietitians, biotech representatives, patients, and families from 16 countries attended the symposium featuring presentations on biochemical mechanisms, diagnostics, novel models, and therapeutic strategies.
• Kumamoto University (Citrin Deficiency Center of Excellence)coreStrategic or Co-development PartnerCitrin Foundation has established a Citrin Deficiency Center of Excellence at Kumamoto University in Japan, funding research and clinical activities focused on citrin deficiency diagnosis, monitoring, and treatment.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• National Urea Cycle Disorders Foundation: U.S.-based patient advocacy and research-funding nonprofit dedicated to urea cycle disorders, including citrin deficiency. Most directly comparable peer because it operates in the same UCD category, funds research, supports patients/families, and runs awareness/educational programs — the same core mission model Citrin Foundation replicates globally.
• Urea Cycle Disorders Consortium (UCDC): NIH-funded Rare Diseases Clinical Research Consortium focused on UCDs, operating a patient registry, conducting natural history studies, and running clinical trials across UCD sub-types including citrin deficiency. Comparable as a research/registry infrastructure peer operating in the exact same disease category as Citrin Foundation's funded programs.
• Orphan Disease Center (University of Pennsylvania): University-based center that funds translational research and drug development for rare/orphan diseases via its Million Dollar Bike Ride grants and pilot programs. Comparable as a disease-agnostic but translational-research-focused grantmaker that overlaps with Citrin Foundation's model of funding academic labs to develop treatments.
• Kumamoto University Citrin Deficiency Center of Excellence: Citrin Foundation-funded Center of Excellence at Kumamoto University where Prof. Saheki (the original discoverer of citrin deficiency) and Prof. Yazaki lead clinical research. Most directly comparable research-institution peer operating in the same disease space and funded by the foundation.

Broad incumbents

• National Organization for Rare Disorders (NORD): Large U.S. rare-disease umbrella organization providing research grants, advocacy, and patient support across 7,000+ rare diseases. Comparable as a broader incumbent in the rare-disease grantmaking and patient-support category where Citrin Foundation operates, though it does not focus on any single disease.
• Global Genes: U.S. rare-disease advocacy nonprofit providing patient support, educational resources, and connections to research — analogous to Citrin Foundation's patient-facing and awareness-building mission, but operating across all rare diseases rather than a single condition.
• EURORDIS - Rare Diseases Europe: European-level alliance of 1,000+ rare-disease patient organizations including UCD groups. Comparable as a peer convener and advocacy body for the same European rare-disease ecosystem in which Citrin Foundation's UK entity and University of Zurich partnership operate.
• EveryLife Foundation for Rare Diseases: U.S. rare-disease policy and advocacy nonprofit advancing newborn screening, access to therapies, and research funding — comparable as an awareness/policy peer that addresses similar systemic barriers (e.g., diagnostic delay, misdiagnosis) to those Citrin Foundation targets.

Others

• ChromaDex Corp. Public biotech (NASDAQ: CDXC) and Citrin Foundation's core co-development partner on the NR/NAD+ modulation program. Comparable not as a charity peer but as the commercial counterparty translating the foundation's funded research into a potential therapeutic — illustrates the biotech partner archetype the foundation engages.

Emerging players

• Patient Worthy: Digital media platform that publishes patient stories and educational content for rare-disease communities. Comparable as a content/awareness peer that addresses the same patient-engagement and disease-literacy gap Citrin Foundation addresses through its blog, newsletters, and patient flyers.

Market position

Strengths5 records

Weaknesses1 record

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/citrinfdn
• Facebookfacebook.com/Citrin-Foundation-100086377428382
• LinkedInlinkedin.com/company/citrin-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Citrin Foundation