Overview
What is National Urea Cycle Disorders Foundation?
The National Urea Cycle Disorders Foundation is a nonprofit organization situated in Pasadena, California. Their primary mission is to enhance the lives of individuals affected by Urea Cycle Disorders, a rare genetic condition. They achieve this through several initiatives. Firstly, they support and attract new researchers in the field with their NUCDF Fellowship Award, aiming to accelerate research and improve access to quality care. Secondly, they are a founding partner of the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium, contributing to various research projects. Furthermore, they foster international research, aiming to increase understanding of the disorders' effects on brain function and develop new treatments. They also maintain an IRB-approved International UCD Patient-Reported Registry, collecting valuable data for research and understanding quality-of-life issues. Lastly, they have a CureUCD eclinical Therapeutic Discovery Lab, aimed at validating potential treatments and accelerating clinical trials. Overall, the National Urea Cycle Disorders Foundation is dedicated to improving the lives of those affected by this condition through research, education, and awareness.
Official website here: www.nucdf.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 96% (Four-Star out of Four Stars)
The National Urea Cycle Disorders Foundation (NUCDF) has received a commendable Four-Star rating from Charity Navigator, reflecting its strong performance in accountability and transparency as well as overall financial health. With an impressive Accountability & Finance Score of 97, the foundation demonstrates effective governance through its fully independent board and robust policies that minimize material asset diversion and emphasize ethical operations.
User feedback highlights NUCDF's critical role in supporting families affected by urea cycle disorders (UCDs). Many families describe the organization as a lifeline, offering timely guidance, emotional support, and vital resources. Testimonials illustrate how NUCDF has not only facilitated connections among families and experts but has also empowered them with knowledge that has proven life-saving. Participants in NUCDF's conferences and activities have expressed deep gratitude for the sense of community and hope fostered by the foundation.
Despite the overwhelmingly positive feedback, some reviews mention the challenges faced by families dealing with rare disorders, implying that while NUCDF provides substantial support, the ongoing journey can still be daunting. Overall, the foundation's commitment to advocacy, education, and connection has made a significant impact on the lives of those affected by UCDs.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about National Urea Cycle Disorders Foundation?
100% of 5 reviewers on Facebook recommend the National Urea Cycle Disorders Foundation. Here is a summary of their reviews:
The feedback highlights a profound sense of community and support offered by the foundation. Reviewers express gratitude for the connections made through this organization, describing it as an essential lifeline for families dealing with Urea Cycle Disorders (UCD). One supporter emphasized the strength and commitment fostered through shared experiences and open discussions, making it clear that the foundation plays a vital role in their journey.
Overall, the sentiment is overwhelmingly positive, with users appreciating the importance of having a voice and a supportive network during challenging times. The National Urea Cycle Disorders Foundation appears to effectively deliver on its mission to unite families and provide necessary emotional and practical support.
This AI summary has been generated from reviews found on Facebook.
Is National Urea Cycle Disorders Foundation legitimate?
National Urea Cycle Disorders Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Urea Cycle Disorders Foundation submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0
For more financial information, click here
Official website here: www.nucdf.org
What is the mission statement of National Urea Cycle Disorders Foundation?
The National Urea Cycle Disorders Foundation's mission is centered around saving and enhancing the lives of individuals with Urea Cycle Disorders. They accomplish this through various strategies. Firstly, they actively drive and support crucial research aimed at improving the quality of life and potentially curing this rare genetic condition. Secondly, they educate healthcare professionals on the identification, diagnosis, and treatment of Urea Cycle Disorders. Thirdly, they provide educational resources and support to affected families, connecting them with one another for mutual encouragement. Fourthly, they strive to increase public awareness about Urea Cycle Disorders, ensuring no child or adult goes undiagnosed due to a lack of knowledge. Lastly, they advocate for the needs of affected individuals and families to policy makers.
Official website here: www.nucdf.org
Who is the CEO of National Urea Cycle Disorders Foundation?
Eva Oseland is the Executive Director of National Urea Cycle Disorders Foundation.
Official website here: www.nucdf.org
What is the revenue of National Urea Cycle Disorders Foundation?
National Urea Cycle Disorders Foundation's revenue in 2022 was $96,373.
Official website here: www.nucdf.org
Who are the executives of National Urea Cycle Disorders Foundation and what are their salaries?
There is 1 employee and 4 volunteers at National Urea Cycle Disorders Foundation.
Here are 6 key members and their salaries:
- Compensation: $99,038
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.nucdf.org
Where can I find the form 990 for National Urea Cycle Disorders Foundation?
National Urea Cycle Disorders Foundation's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.nucdf.org
Learn more at the official website: www.nucdf.org
Mission Statement of National Urea Cycle Disorders Foundation
The National Urea Cycle Disorders Foundation is dedicated to saving and improving the lives of individuals affected by Urea Cycle Disorders. This nonprofit organization strives to achieve this mission by undertaking several key initiatives. Firstly, it drives and supports critical research aimed at improving the quality of life for those with Urea Cycle Disorders and working towards a cure. Secondly, the foundation educates healthcare professionals on the identification, diagnosis, and treatment of these disorders. This educational outreach ensures that medical professionals are equipped with the necessary knowledge to provide appropriate care to affected individuals.
In addition to its research and educational efforts, the National Urea Cycle Disorders Foundation provides valuable resources and support to affected families. It offers information and education to help families better understand their loved ones' conditions, as well as connecting them with other families who are going through similar experiences. The organization's mission also includes increasing public awareness of Urea Cycle Disorders, ensuring that no child or adult suffers or dies undiagnosed due to lack of knowledge. Furthermore, the foundation advocates for the needs of affected individuals and families, educating policy makers to ensure they receive the necessary support.
Shop smarter and support your favorite cause with the Give Freely browser extension. Save money with coupons and donate to charity with a single click. Download now!
Impact
October, 2024
The National Urea Cycle Disorders Foundation (NUCDF) makes a significant impact on the lives of those affected by Urea Cycle Disorders (UCDs), which are rare genetic metabolic conditions. Through a multifaceted approach, NUCDF focuses on saving lives and enhancing the quality of life for individuals diagnosed with these disorders.
One of the key areas of impact is in advancing research. The NUCDF Fellowship Award supports new investigators in UCD research, aiming to accelerate the discovery of effective treatments and improve access to quality care. As a founding partner of the NIH Rare Diseases Clinical Research Network’s Urea Cycle Disorders Consortium, the foundation plays a central role in leading various research projects, including natural history studies and clinical trials. This includes significant collaboration that fosters innovation in treatment development and enhances understanding of the disorders' effects, particularly on brain function.
Additionally, NUCDF runs the International UCD Patient-Reported Registry, an IRB-approved initiative that collects valuable data to inform natural history and outcome studies. This registry not only aids in research acceleration but also helps identify unmet needs among patients, ensuring their concerns and realities are prioritized in ongoing research efforts.
Education is another crucial pillar of NUCDF’s mission. By providing resources and information to healthcare professionals, families, and the general public, the foundation helps improve the identification, diagnosis, and treatment of UCDs. This educational outreach aims to ensure that fewer individuals suffer or die undiagnosed, thereby raising awareness of these life-threatening conditions.
Moreover, the NUCDF's CureUCD eclinical Therapeutic Discovery Lab serves as a model for validating potential treatments, with a mandate to expedite the clinical trial process to bring new interventions to those in need more efficiently.
In summary, the National Urea Cycle Disorders Foundation plays a vital role in enhancing the lives of individuals affected by UCDs through research support, education, community engagement, and the promotion of awareness surrounding these serious conditions.
This information is meant to be a general summary of National Urea Cycle Disorders Foundation. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: $360
- Gross Receipts: $96,373
Assets and Liabilities:
- Total Assets: $821,328
- Total Liabilities: $0
- Net Assets: $821,328
Want to help this charity, for free? You can click here to learn more about Give Freely
Organization Details
Founding Year
1990
Phone
(626) 578-0833Principal Officer
Eva Oseland
Main Address
75 South Grand Avenue, Pasadena, CA, 91105
Website
www.nucdf.orgNTEE Category
Code: E99Z - Health
If you are a representative of National Urea Cycle Disorders Foundation and wish to learn more about how Give Freely can help you raise funds, please click here: https://givefreely.com/nonprofits/. Our services are offered at no cost to your organization.