EIN 41-1661444

National Urea Cycle Disorders Foundation

IRS 501(c) type
501(c)(3)
Num. employees
1
Year formed
1990
Most recent tax filings
2022-12-01
Description
NUCDF saves & improves lives by educating patients and doctors, supporting research & increasing awareness of rare genetic metabolic disorder.
Total revenues
$96,373
2022
Total expenses
$194,539
2022
Total assets
$821,328
2022
Num. employees
1
2022

Program areas at National Urea Cycle Disorders Foundation

Research,Science/Medicine Programs:1)NUCDF Fellowship Award attracts/supports new investigators in the field of urea cycle disorder research & clinical care; goal is to accelerate research & improve access to quality care. 2) Founding partner NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium. Research projects include natural history & neuroimaging studies, clinical trials for new treatments. NUCDF exec director serves as Consortium Co-Principal Investigator in key leadership role directly stimulating & developing research projects/protocols, engaging patient community, communicating research activities & progress to patient community & reducing barriers to patient participation in research. 3) Accelerates/supports international research, increases understanding of disorders/effects on brain function. Facilitates development/enrollment of clinical trials for new treatments/devices & validation of next-generation diagnostic and screening technologies. Strategic development & funding of neuroscience collaborations to accelerate research on effects of UCD on brain function & long-term health, development of treatments/interventions to prevent brain damage & improve cognitive function. 4) IRB-approved International UCD Patient-Reported Registry collects natural history/outcome data to accelerate research & understand QOL issues, identify unmet patient needs/issues for research. 5) CureUCD eclinical Therapeutic Discovery Lab: model project to validate potential treatments & accelerate development of clinical trials.
NUCDF Patient and Family Support Programs 1) Serve as lifelines to families & affected individuals worldwide in need of information peer-to-peer support to families and patients struggling with new diagnosis, facing medical crises, or in need of resources or emotional support. Connects affected families together for support. Actively serves over 1300 families and medical professionals. 2) Maintains moderated private online support community with groups, discussions, educational/informational videos, forums, blogs. 3) NUCDF Family Conference, local "meet-ups" & networking activities connect families for support and provide credible information to improve outcomes. Connects affected patients & families with world-renowed medical experts, latest research/treatment information not available anywhere else. Conference provides opportunities for patients and families to participate in research studies conducted at conference. 4) Online meetings/webcasts/webinars provide information to increase understanding of the disorder, treatment and management, and educate community about research activities.
Advocacy, Education & Awareness Programs 1) Advocacy partnerships, policy & programs to benefit UCD patient community & rare disease community at large. 2) NUCDF websites serve as vital portals & lifelines to provide credible information & educational resources to healthcare professionals, affected families/patients & public, facilitate communication & support mechanisms. Programs facilitate identification, diagnosis/treatment for over 200 new families/yr. 3) Multiple portals facilitate e-communications & support network for over 2000 healthcare professionals & affected families in over 40 countries. 4) Patient & medical professional education programs include webcasts/webinars, Annual Family Conference, international scientific symposia, speakers bureau, Grand Rounds & symposium presentations, educational seminars for medical professionals, CheckAmmonia.com education website for healthcare professionals. 5) Awareness activities include annual events (Rare Disease Day, Cure the Cycle Challenge), educational booths at medical society conferences, targeted media to increase identification of undiagnosed patients, educate/inform public & med professionals about prevalence, early identification, risks, etc. 6) Publications, educational materials, guides, resource library, research & news briefs available in wide variety of formats through website, listserv, online community, exhibits and other rare disease community.

Who funds National Urea Cycle Disorders Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
AmazonSmile FoundationGeneral Support$887

Personnel at National Urea Cycle Disorders Foundation

NameTitleCompensation
Eva OselandSecretary and Treasurer$0
Cynthia LemonsPast Executive Director$99,038
Tresa WarnerPresident$0

Financials for National Urea Cycle Disorders Foundation

RevenuesFYE 12/2022
Total grants, contributions, etc.$96,013
Program services$0
Investment income and dividends$360
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$96,373

Form 990s for National Urea Cycle Disorders Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-122023-08-13990View PDF
2021-122022-11-13990View PDF
2020-122021-11-15990View PDF
2019-122022-01-19990View PDF
2018-122020-06-19990View PDF
...and 10 more Form 990s
Data update history
October 6, 2023
Posted financials
Added Form 990 for fiscal year 2022
July 29, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 26, 2023
Posted financials
Added Form 990 for fiscal year 2020
May 30, 2023
Updated personnel
Identified 1 new personnel
February 4, 2023
Posted financials
Added Form 990 for fiscal year 2019
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchTax deductible donations
General information
Address
75 S Grand Ave
Pasadena, CA 91105
Metro area
Los Angeles-Long Beach-Anaheim, CA
County
Los Angeles County, CA
Website URL
nucdf.org/ 
Phone
(626) 578-0833
IRS details
EIN
41-1661444
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1990
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
Free account sign-up

Want updates when National Urea Cycle Disorders Foundation has new information, or want to find more organizations like National Urea Cycle Disorders Foundation?

Create free Cause IQ account