NATIONAL UREA CYCLE DISORDERS FOUNDATION

Name

NATIONAL UREA CYCLE DISORDERS FOUNDATION

Legal name

National Urea Cycle Disorders Foundation

Website

https://nucdf.org

Company type

Private

Founded year

1988

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Scientific Research and Development Services (5417)

SIC

Services-Health Services (8000), Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Urea cycle disorders
• Patient support services
• Medical research funding
• Nonprofit healthcare education

Headquarters

HQ city

Pasadena

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Contributions: NUCDF receives donations from individual donors, families, and supporters who contribute to fund research, awareness programs, and patient support services.
2. Membership Dues: Annual membership program offering supporters various levels of involvement and benefits.
3. Cure the Cycle Challenge Fundraiser: Annual cycling/fundraising event where participants raise money through pledges and donations to support UCD research.
4. Grants and Research Funding: Foundation receives grants and funds research initiatives, clinical trials, and fellowships through partnerships with NIH, industry partners, and charitable foundations.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

NUCDF is a nonprofit patient advocacy foundation that provides free support, education, and research funding for patients and families affected by urea cycle disorders (UCDs). Its core offerings include patient and family education resources, an annual family conference, clinician education via the ECHO series, the UCD International Patient Registry, research fellowships such as the Cynthia Le Mons Fellowship, and advocacy campaigns including Check Ammonia and newborn screening initiatives. Services are funded through donations, grants, membership fees, and event sponsorships.

Product overview

NUCDF is a nonprofit patient advocacy organization (not a typical technology company) that provides a portfolio of support services for urea cycle disorder patients and families. The core offerings include the NUCDF Partner Network for stakeholder collaboration, the UCD International Patient Registry for research data collection, the Urea Cycle Disorders ECHO clinician education program, MyRareDiet dietary tracking tool, and educational resources including guides, videos, and family conferences. The organization also funds research through the Cynthia Le Mons Fellowship and hosts the annual Cure the Cycle Challenge fundraiser.

Differentiator

Problem solved

Functional benefit

Products and services

• NUCDF Partner Network A multistakeholder network that connects UCD patients, caregivers, clinicians, researchers, and industry partners to advance research and develop a roadmap for future urea cycle disorder research.
• Urea Cycle Disorders ECHO: The Essentials Virtual education program for frontline clinicians on recognition, diagnosis, and treatment of urea cycle disorders, delivered in partnership with Project ECHO.
• UCD International Patient Registry International patient registry for urea cycle disorders that collects longitudinal data to support clinical research and treatment development.
• Check Ammonia Toolkit Resource for recognizing signs and symptoms of UCDs and checking blood ammonia levels to enable prompt diagnosis, used as part of the Check Ammonia Month awareness campaign.
• MyRareDiet™ Nutrition software application and mobile health tool for dietary management in patients with inborn errors of metabolism, being tested for clinical and research use.
• UCD Guides and Educational Resources Comprehensive guides including New Family Guides, Medication and Formula Management, Educator Guide to UCD, Low Protein Foods resources, and Spanish-language materials for patients, families, and educators.
• Annual Family Conference Annual in-person conference bringing together UCD patients, families, clinicians, researchers, and industry partners for education, support, and community connection.
• Cure the Cycle Challenge Annual cycling/fundraising event where participants raise pledges and donations to support UCD research, held in memory of those lost to UCDs.
• Cynthia Le Mons Fellowship Research fellowship program supporting early-stage investigators conducting research in urea cycle disorders, funded by NUCDF's annual Cure the Cycle event.

Quantifiable outcome

• Over 30 years of service as the only organization solely dedicated to UCDs
• +3 more outcomes

Named customers2 records

Segments1 record

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered core, minor and major.

• St. Jude Children's Research HospitalcoreStrategic or Co-development Partner · 1 January 2026NUCDF is collaborating with Dr. Andrea Gropman of the Pediatric Translational Neuroscience Initiative at St. Jude for the 2026 NUCDF Family Conference. The conference includes the Urea Cycle Disorders: The Rhythm of Progress Symposium hosted by St. Jude in collaboration with UCDC and NUCDF.
• Conference Industry Sponsors (IECURE, Immediacy, Ultragenyx, Alterna, Arcturus, Eton, Korro Bio, Menduik, Cycle)minorGTM or Marketing Partner · 1 January 2026Pharmaceutical and biotech companies sponsoring the 2026 NUCDF Family Conference including IECURE, Immediacy, Ultragenyx, Alterna, Arcturus, Eton, Korro Bio, Menduik, and Cycle.
• Zevra TherapeuticsmajorGTM or Marketing Partner · 1 January 2024NUCDF and Zevra Therapeutics partnered to launch the Check Ammonia campaign during Check Ammonia Month (October) to improve diagnosis of urea cycle disorders by highlighting the importance of promptly checking blood ammonia levels.
• Immedica PharmamajorGTM or Marketing Partner · 1 January 2023Immedica Pharma acquired global rights to pegzilarginase from Aeglea and achieved FDA approval for Loargys in February 2026. NUCDF community engagement and advocacy contributed to patient access during the transition period.
• EveryLife Foundation / Texas Rare AllianceminorStrategic or Co-development Partner · 1 January 2023NUCDF participated in coalition advocacy with EveryLife Foundation and over 60 patient advocacy organizations supporting Texas newborn screening legislation (House Bill 2478), making Texas the 11th state to pass RUSP alignment legislation.
• Arginase 1 Deficiency FoundationmajorOthers · 1 January 2020The ARG1-D Foundation was launched by families to give affected families a focused voice. They partnered with NUCDF to support the Cynthia Le Mons Fellowship and hosted fundraisers to support arginase 1 deficiency research.
• Urea Cycle Disorders Consortium (UCDC)coreStrategic or Co-development Partner · 1 January 2003NUCDF partners with the Urea Cycle Disorders Consortium, part of the NIH-funded Rare Diseases Clinical Research Network (RDCRN). NUCDF helped establish the consortium and serves as a co-principal investigator. The consortium has been conducting the longest-running natural history study of inherited metabolic disorders since 2003, with nearly 1,000 enrolled subjects and over 100 publications.
• Baylor College of MedicinecoreStrategic or Co-development PartnerNUCDF partners with Baylor College of Medicine researchers including Dr. Brendan Lee and Dr. Lindsay Burrage for UCD research. NUCDF fellowships have funded foundational research that led to pegzilarginase treatment approval for arginase 1 deficiency. The CureUCD Center for Preclinical Discovery was established in partnership with Baylor.
• Pacific Northwest Research Institute (PNRI)coreStrategic or Co-development PartnerNUCDF supports research collaboration between PNRI's Dudley Lab and UCDC researchers. Dr. Aimée Dudley's team uses yeast genetics to study UCD gene variants, including analysis of 1,570 OTC variants to improve diagnosis. NUCDF has awarded fellowships to researchers at PNRI including Shradha Suyal, PhD.
• Project ECHOcoreStrategic or Co-development PartnerNUCDF partners with Project ECHO to host educational series 'Urea Cycle Disorders ECHO: The Essentials' for clinicians, focusing on recognition, diagnosis, and treatment of UCDs. The first session was held in 2025.
• National Organization for Rare Disorders (NORD)majorStrategic or Co-development PartnerNUCDF is a member of NORD and participates in the UCD Patient Assistance Program administered by NORD. NORD provides financial assistance to eligible rare disease patients up to $1,000 annually for emergency essential expenses.
• Genetic AllianceminorOthersNUCDF is a member of Genetic Alliance, a network of organizations supporting families and advocates dealing with genetic conditions.
• Citrin FoundationminorOthersCitrin Foundation is a partner organization focused on citrin deficiency, a specific type of urea cycle disorder.
• Children's National HospitalcoreStrategic or Co-development PartnerNUCDF collaborates with Children's National Hospital researchers including Dr. Andrea Gropman on UCDC research, yeast genetics collaboration, and clinical care guidelines. Dr. Gropman serves as UCDC Principal Investigator.

Scale indicators5 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Children's Tumor Foundation: Disease-specific rare disease nonprofit (neurofibromatosis) that combines patient support, research funding, clinical networks, and a multi-state advocacy footprint. Directly comparable in structure and breadth of programs to NUCDF, at slightly larger scale.
• Acid Maltase Deficiency Association: Patient advocacy organization for Pompe disease, another ultra-rare inherited metabolic disorder. Closely mirrors NUCDF's operating model: small staff, family conferences, research funding, and newborn screening advocacy.
• EveryLife Foundation: Rare disease advocacy coalition that NUCDF partnered with on Texas RUSP alignment legislation. Comparable as a policy-focused advocacy partner with a multi-stakeholder coalition model.
• National Organization for Rare Disorders (NORD): U.S. umbrella rare disease advocacy organization. NUCDF is a NORD member and participates in NORD-administered patient assistance programs. NORD's broader portfolio of disease-specific member organizations provides the most direct structural comparison.
• Organic Acidemia Association: Patient advocacy nonprofit focused on organic acidemias, a related group of rare inherited metabolic disorders. Highly comparable in mission, scale, and operating model to NUCDF, including family conferences and research partnerships.
• Citrin Foundation: Patient advocacy partner organization focused on citrin deficiency, a specific subtype of urea cycle disorder. NUCDF and Citrin Foundation are mutual partners serving overlapping patient communities and research networks.

Broad incumbents

• Genetic Alliance: Network organization supporting families and advocates dealing with genetic conditions. NUCDF is a member; provides broader disease-spanning support infrastructure analogous to NUCDF's role for the UCD subset.
• Cystic Fibrosis Foundation: Disease-specific health nonprofit that funds a major research consortium, runs patient registries, and drives newborn screening and treatment approval (e.g., Trikafta). A scaled-up, mature analog to NUCDF's UCD model with a far larger budget and headcount.
• Muscular Dystrophy Association: Established rare disease nonprofit funding research, running family conferences, and operating a multi-disease patient registry. A scaled analog of NUCDF's combined research + community model.
• American Liver Foundation: Disease-area nonprofit (broader liver disease) that funds research, runs patient education, and engages clinicians. Comparable in that UCDs manifest in the liver, but operates at much larger scope and budget than NUCDF's UCD focus.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/cureucd
• YouTubeyoutube.com/@NUCDF
• Facebookfacebook.com/nucdf
• LinkedInlinkedin.com/company/nucdf
• Instagraminstagram.com/cureucd/?igshid=OGQ5ZDc2ODk2ZA%3D%3D

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about NATIONAL UREA CYCLE DISORDERS FOUNDATION