TYR -1 HT-1
CanPKU+ is an open door for those who do not have a support group already set up in Canada.
TYR-1 is helped by a group located in Quebec. They can help in English, French and Spanish.
We refer questions of support to this group, however we are still able to help with the Disability Tax Credit.
CanPCU+ est une porte ouverte pour ceux qui n'ont pas de groupe de soutien déjà établi au Canada.
HT-1 est aidé par un groupe situé au Québec. Ils peuvent aider en anglais, français et espagnol.
Nous renvoyons les questions de soutien à ce groupe, mais nous sommes toujours en mesure d'aider avec le crédit d'impôt pour personnes handicapées.
CanPKU+ believes that creating awareness around Tyrosinemia Type-1 and other rare diseases helps patients…Because Knowledge Leads to Better Health.
When people are aware of a condition, they are more likely to be understanding and supportive. This might be as simple as ensuring that there are appropriate food choices at the next party your child attends, or it might mean that a politician will fight on your behalf for coverage of treatments.
Gérard Tremblay, père de Jeannick Tremblay, préside un regroupement de parents d’enfants tyrosinémiques. Il s’est lui aussi réjoui de voir que Québec investit pour venir en aide aux familles.
According to Newborn Screening Ontario the instance of a baby being born with Tyrosinemia is type 1 is 1 in 100,000. Find out more here
Tyrosinemia type I affects males and females in equal numbers. The prevalence has been estimated to be 1 in 100,000 to 120,000 births worldwide. In Quebec, Canada, the birth prevalence is estimated to be 1/16,000. The estimated prevalence in the Saguenay-Lac Saint-Jean region of Quebec is one in 1,850 births. In Norway, the birth prevalence is estimated to be 1 in 60,000 births.
Downloadable Resources for Individuals with TYR-1
Don't forget to link back to GENERAL DOWNLOADS which have over all downloads for you.
You can also check out the resources under the Research and Patient Support Drop down menu.
General Information and Links
2022 - Cambrooke has created a Wellness Journal for those with TYR-1 . It is USA based information but most of it still applies to Canadians. Download it here. It will provide information as well as ways to track your rare. Refill pages for tracking can be downloaded here
Formula Based Information
RxModality has solutions for Tyr-1. Unfortunately, at this time, none of these products have coverage at the moment in Canada. Should you have any questions on these products email Petr Formanek or want to help us advocate for their coverage please contact us at firstname.lastname@example.org ZeroSystems
Region or Province Based
Apps to help you manage your TYR-1
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