NUCDF has been working to develop MyRareDiet, a unique site specifically designed to help UCD and other Inborn Errors of Metabolism patients and caregivers more easily track, monitor, and manage dietary treatment.?The purpose of the study's second phase is to evaluate MyRareDiet for people who have or take care of, those who have inborn errors of metabolism. Find more details at https://lnkd.in/eYHg7qF3 #myrarediet #nucdf #ureacycledisorders #ureacycledisorder #inbornerrorsofmetabolism
National Urea Cycle Disorders Foundation
非盈利组织
Pasadena,California 550 位关注者
Dedicated to saving and improving the lives of children and adults with urea cycle disorders.
关于我们
We know Urea Cycle Disorders. We live to conquer them. The National Urea Cycle Disorders Foundation is the only nonprofit organization in the world solely dedicated to saving and improving the lives of children and adults from the catastrophic effects of urea cycle disorders. Formed in 1988 by a handful of parents whose children were affected, NUCDF has grown to be an internationally recognized leader in the fight to conquer urea cycle disorders (UCD) and raise awareness that saves lives. NUCDF is the driving force behind critical research to improve the understanding and management of UCD, find new treatments, and ultimately a cure. NUCDF serves as a lifeline to UCD patients, families, and medical professionals worldwide seeking information, support, and HOPE. We partner with the Urea Cycle Disorders Consortium, an NIH-funded Rare Diseases Clinical Research Network, to advance research in this area.
- 网站
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https://nucdf.org
National Urea Cycle Disorders Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Pasadena,California
- 类型
- 非营利机构
- 创立
- 1988
- 领域
- Rare diseases、Patient advocacy、Medical research、Urea cycle disorders、Community building、Education、Public awareness、Ornithine Transcarbamylase (OTC) Deficiency、Carbamoyl-phosphate Synthase 1 (CPS1) Deficiency、Argininosuccinate lyase deficiency (ASLD)、argininosuccinic aciduria、citrullinemia、Argininosuccinate Synthase (ASS) Deficiency、hyperargininemia、N-acetylglutamate Synthase (NAGS) Deficiency、citrin deficiency、hyperammonemia和Arginase (ARG) Deficiency
地点
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主要
75 S Grand Ave
US,California,Pasadena,91105
National Urea Cycle Disorders Foundation员工
动态
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Coming soon: April is Urea Cycle Disorders Awareness Month! ?? Help us spread the word and create awareness for our community. Learn more throughout the month of April. #nucdf #comingsoon #ureacycle #ureacycledisorder #ureacycledisorders #ucdawarenessmonth #april
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You’re invited to a Mythical Ball! The best part? You don’t have to leave your house! Find out more and see how to invite your friends: https://lnkd.in/een4Nwqg #mythicalball #nucdf #ureacycle #ureacycledisorders #ureacycledisorder #metabolicdisorders #metabolic #genetic #geneticdisorders
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Happy St. Patrick's Day! #happystpatricksday #nucdf
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Want to make a difference for NUCDF right in your own hometown? You can host a fundraiser right in your community! Not sure where to start? We’ve got plenty of ideas on our website. Love running? Host a 5K! Enjoy golf? Why not organize a tournament? Check out all our suggestions here: https://lnkd.in/eBYAyTUA #fundraiser #nucdf #nationalureacycledisordersfoundation #ureacycledisorders #ureacycle #metabolicdisorders #geneticdisorders
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We will be in Los Angeles in March for the ACMG meeting and would LOVE to schedule a meet-up with our West Coast families! Comment below if you're interested in meeting up. We'll share the location privately. Can't wait to see you all! Find out more about the ACMG meeting here: https://lnkd.in/dVfzhMBW #ucd #ureacycle #ureacycledisorder #nucdf #acmg
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How can we support you? #support #nucdf #ureacycledisorder #ureacycledisorders
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We will continue to share the importance of this unseen threat. Delayed diagnosis of hyperammonemia can lead to neurological damage or death. CHECK AMMONIA #checkammonia #neurologicaldamage #hyperammonemia #nucdf #metabolicdisorders #geneticdisorders #ureacycledisorders #urea #ureacycle #ureacycledisorder
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+1
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Don’t forget to “spring ahead” this weekend! #daylightsavings #springforward
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