Invite your friends to “not attend” the fanciest event of the year! It’s the perfect way to get involved, have fun, and support a cause you care about – without the need to buy a ticket, rent a tux, or dust off your ballroom dancing shoes (although if you choose to dress up and dance at home, that’s okay too)! Get more information and find out how to invite your friends and family here: https://lnkd.in/een4Nwqg #nucdf #mythicalball
National Urea Cycle Disorders Foundation
非盈利组织
Pasadena，California 557 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
获取路线
75 S Grand Ave
US，California，Pasadena，91105
National Urea Cycle Disorders Foundation员工
动态
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A big thank you to students from Lennox High School in Lennox, South Dakota, for their recent donation of over $400 to the NUCDF. The students raised funds through a Santa Elves initiative in December and donated the proceeds to NUCDF in honor of Pruitt, a UCD patient who sadly lost his battle. Pruitt’s mom, Jordan, works at the school district, so the students wanted to show their support. #nucdf #thankyou #ureacycledisorder #donation #ureacycledisorders
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The Mythical Ball is the fanciest event that never happens! That's right — there's no dress code, no dancing, no hors d'oeuvres... but there is an incredible opportunity to support the National Urea Cycle Disorders Foundation and make a real difference. This one-of-a-kind fundraiser invites you to "not attend" a ball while making a meaningful contribution. It's the perfect chance to get involved, have fun, and support a cause you care about — without the need to buy a ticket, rent a tux, or dust off your ballroom shoes! Find out how YOU can invite your friends and family here: https://lnkd.in/een4Nwqg #mythicalball #nucdf #youreinvited
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NUCDF attended the ACMG Conference this past week in Los Angeles. The ACMG Conference gathers members of?the medical genetics community from around the world for professional growth, education, networking, and collaboration with peers. Pictured: Tresa Warner (NUCDF Interim Director), Jill Williams (NUCDF Deputy Director), Amanda Sonntag (NUCDF Board Member), Dr. Andrea Gropman (NUCDF Medical Advisory Board Member), Dr. Susan Berry (NUCDF Medical Advisory Board Member), Dr. Shawn McCandless, Dr. Lindsay Burrage (NUCDF Medical Advisory Board Member), Resident Physician Steven Lang, and Dr. Stephen Cerderbaum. #nucdf #acmg #genetics #geneticconditions
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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
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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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