Nota Cares

Banding Together to Support those Suffering from Tyrosinemia

There Are Three Types Of Tyrosinemia

Each has distinctive symptoms and is caused by the
deficiency of a different enzyme.

Medications Treatment

Nutritional treatment should be designed to minimize the phenylalanine-tyrosine load to only essential requirements.

Treatment with Orfadin

Dietary Management

Because every child has a different “tolerance” of tyrosine and phenylalanine, dietary management is individualized.

Therapeutic Nutrition

Supplements Treatment

Phenylalanine needs to be restricted along with tyrosine. Phenylalanine is converted into tyrosine in the body.

Treatment with Nityr

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What Genes are Related to Tyrosinemia?

The FAHgene provides instructions for the fumarylacetoacetate hydrolase enzyme, which is responsible for the final step of tyrosine breakdown. The enzyme produced from the TAT gene, called tyrosine aminotransferase enzyme, is involved at the first step in the process.
The HPD gene provides instructions for making the 4-hydroxyphenylpyruvate dioxygenase enzyme, which is responsible for the second step.
Mutations in the FAH, TAT, or HPD gene cause a decrease in the activity of one of the enzymes in the breakdown of tyrosine.
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THE NETWORK OF TYROSINEMIA ADVOCATES

N.O.T.A. PROBLEM, We’ve got each other.

Insuring that no child or individual around the globe goes untreated.

Providing families affected the resources available to them.

Connecting multiple organization worldwide to build a strong community

Supporting every parent. You are not alone in this struggle, and you have the support you need at critical times.

Striving for perfect newborn screening in an effort to never miss a child’s diagnosis ever again.

Gathering stories of our families, resources, recipes, and news related to Tyro to be shared with each other and hospitals.

Update June 2020: Nota Camp At Victory
Junction Cancelled Due To Covid-19

After lengthy discussions with Victory Junction, we have decided to cancel the NOTA
Camp that was scheduled for September 2020.

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Tyrosinemia type II occurs in fewer than 1 in 250,000 individuals worldwide.
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