By NOTA · For families with a new diagnosis, and the questions that come right after it Somewhere between the diagnosis and the first metabolic clinic appointment, almost every parent asks the same question, usually silently: did we do this? Followed closely by a second one — if we have another child, will this happen […]
Understanding the Genetics of Tyrosinemia: What It Means for Your Family Read More »
By a parent in the NOTA community · For families who just got the news Nobody warns you about the fog. Not the diagnosis itself — that arrives in a phone call you’ll replay for days — but everything that comes after it. The stack of papers from the hospital. The terms you’ve never heard
My Child Was Just Diagnosed with Tyrosinemia Type 1 – Here’s What No One Tells You Read More »
Managing Tyrosinemia in children requires more than just medical treatment; it demands a carefully controlled diet that supports growth while preventing harmful buildup of tyrosine in the body. For parents and caregivers, understanding what to feed (and what to avoid) can feel overwhelming at first. This guide simplifies everything you need to know about a
Tyrosinemia Diet Guide: Foods To Avoid, Nutrition Tips, And Meal Planning For Children Read More »
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
Types Of Tyrosinemia Explained: HT-1, HT-2, And HT-3 Symptoms, Causes, And Treatment Read More »
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
Thank You 2023 Sponsors and Save the Date for NOTA Camp 2024 Read More »
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
NOTA Launches New Website Read More »
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
Thank you to the sponsors and participants in NOTA Camp 2021 Read More »
Fund Helps Families Pay For Children’s Medical Bills Read the full story here Fund Helps Families Pay for Children’s Medical Bills
Fund Helps Families Pay For Children’s Medical Bills Read More »
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
2019 PROGRESS IN HT-1 NEWBORN SCREENING Read More »
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 Cycle Regarding Nityr Read More »
