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Tyrosinemia is a rare inherited condition that affects how the body processes tyrosine. Tyrosine is an amino acid found in many common foods. When the body cannot break it down properly, harmful substances start building up. Over time, this buildup can cause serious health problems in different organs. Although Tyrosinemia is not very common, understanding

A huge THANK YOU to the families who attended our 2024 NOTA Family Weekend at Rocking Horse Ranch in New York. Our third visit to the ranch was filled with horseback riding, swimming and other fun activities, as well as more time for community discussion. Special thanks to the Rocking Horse Ranch for hosting us

Thank You 2023 Sponsors and Save the Date for NOTA Camp 2024 A huge THANK YOU to the families who attended our 2023 NOTA Family Weekend at Rocking Horse Ranch in New York. Our second visit to the ranch was filled with horseback riding, swimming and other fun activities, as well as more time for

Welcome to NOTA’s new website! We hope you find this site easier to navigate to find the information you are looking for, whether that’s support for parents of a child newly diagnosed with tyrosinemia, links to available treatments, or the latest news from our community. If you have feedback on how we could make the

Thank you to the sponsors and participants in NOTA Camp 2021 A huge THANK YOU to the families who attended our 2021 NOTA Family Weekend at Rocking Horse Ranch in New York. We had so much fun coming together as a community: horseback riding, swimming, rock climbing, playing laser tag, and so much more. Special

Fund Helps Families Pay For Children’s Medical Bills Read the full story here Fund Helps Families Pay for Children’s Medical Bills

2019 Progress In Ht-1 Newborn Screening Sobi presented an update on the state of newborn screening for Hereditary Tyrosinemia Type 1 (HT-1) in the United States during the Association of Public Health Laboratories’ (APHL) 2019 Newborn Screening and Genetic Testing Symposium, April 7-10 in Chicago. A 2015 Sobi-sponsored study showed 78% (39 of 50) of

Covid-19 Update From Cycle Regarding Nityr At Cycle Pharmaceuticals, the health and safety of patients with tyrosinemia type 1 (HT-1) is our top priority. As the Coronavirus increases in worldwide prevalence, please have full confidence that the supply chain for NITYR® (nitisinone) Tablets is fully organized and managed to serve patients with HT-1 and their

Covid-19 Update From Cambrooke Foods To all our Cambrooke customers and friends, Nothing at Cambrooke is more important to me than your well-being and that of our Cambrooke team. In response to the rapidly evolving COVID-19 virus, I want to assure you that we have taken several measures in order to faithfully ensure uninterrupted delivery