NATIONAL UREA CYCLE DISORDERS FOUNDATION
- Company typePrivate
- Founded1988
- HeadquartersPasadena, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
NATIONAL UREA CYCLE DISORDERS FOUNDATION firmographics
Firmographics- 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
NATIONAL UREA CYCLE DISORDERS FOUNDATION industry classification
Industry- 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
Where NATIONAL UREA CYCLE DISORDERS FOUNDATION is headquartered
LocationHeadquarters
- HQ city
- Pasadena
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
NATIONAL UREA CYCLE DISORDERS FOUNDATION business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Contributions: NUCDF receives donations from individual donors, families, and supporters who contribute to fund research, awareness programs, and patient support services.
- Membership Dues: Annual membership program offering supporters various levels of involvement and benefits.
- Cure the Cycle Challenge Fundraiser: Annual cycling/fundraising event where participants raise money through pledges and donations to support UCD research.
- 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
NATIONAL UREA CYCLE DISORDERS FOUNDATION product offering
Product offeringCore 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
Companies that use NATIONAL UREA CYCLE DISORDERS FOUNDATION
Customer profileNamed customers2 records
Segments1 record
Ideal customer profiles3 records
NATIONAL UREA CYCLE DISORDERS FOUNDATION technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
NATIONAL UREA CYCLE DISORDERS FOUNDATION partnerships and signals
Strategic signalPartnerships
14 partnerships are on record, tiered core, minor and major.
- St. Jude Children's Research HospitalcoreNUCDF 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)minorPharmaceutical and biotech companies sponsoring the 2026 NUCDF Family Conference including IECURE, Immediacy, Ultragenyx, Alterna, Arcturus, Eton, Korro Bio, Menduik, and Cycle.
- Zevra TherapeuticsmajorNUCDF 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 PharmamajorImmedica 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 AllianceminorNUCDF 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 FoundationmajorThe 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)coreNUCDF 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 MedicinecoreNUCDF 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)coreNUCDF 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 ECHOcoreNUCDF 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)majorNUCDF 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 AllianceminorNUCDF is a member of Genetic Alliance, a network of organizations supporting families and advocates dealing with genetic conditions.
- Citrin FoundationminorCitrin Foundation is a partner organization focused on citrin deficiency, a specific type of urea cycle disorder.
- Children's National HospitalcoreNUCDF 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
NATIONAL UREA CYCLE DISORDERS FOUNDATION competitors and assessment
Company assessmentDirect 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
NATIONAL UREA CYCLE DISORDERS FOUNDATION social profiles
Digital presenceNATIONAL UREA CYCLE DISORDERS FOUNDATION financial estimates
Financial estimateRevenue estimate
Valuation estimate
NATIONAL UREA CYCLE DISORDERS FOUNDATION leadership team
Management profileNumber of profiles
Profiles1 record
NATIONAL UREA CYCLE DISORDERS FOUNDATION funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
NATIONAL UREA CYCLE DISORDERS FOUNDATION M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about NATIONAL UREA CYCLE DISORDERS FOUNDATION
What does NATIONAL UREA CYCLE DISORDERS FOUNDATION do?
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.
Is NATIONAL UREA CYCLE DISORDERS FOUNDATION a public or private company?
NATIONAL UREA CYCLE DISORDERS FOUNDATION is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was NATIONAL UREA CYCLE DISORDERS FOUNDATION founded?
NATIONAL UREA CYCLE DISORDERS FOUNDATION was founded in 1988. It employs 1 to 10 people.
Where is NATIONAL UREA CYCLE DISORDERS FOUNDATION based?
NATIONAL UREA CYCLE DISORDERS FOUNDATION is headquartered in Pasadena, United States, in the North America region.
How does NATIONAL UREA CYCLE DISORDERS FOUNDATION make money?
Four revenue lines are on record. Donations and Contributions are the primary driver. The others are membership Dues, cure the Cycle Challenge Fundraiser and grants and Research Funding.
Who are NATIONAL UREA CYCLE DISORDERS FOUNDATION's main competitors?
Direct peers on record are Children's Tumor Foundation, Acid Maltase Deficiency Association, EveryLife Foundation, National Organization for Rare Disorders (NORD), Organic Acidemia Association and Citrin Foundation. Broad incumbents are Genetic Alliance, Cystic Fibrosis Foundation, Muscular Dystrophy Association and American Liver Foundation.
Does NATIONAL UREA CYCLE DISORDERS FOUNDATION have an API?
No public API is recorded for NATIONAL UREA CYCLE DISORDERS FOUNDATION.
What industry is NATIONAL UREA CYCLE DISORDERS FOUNDATION in?
NATIONAL UREA CYCLE DISORDERS FOUNDATION's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8000.