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Tyrosinemia Type 1

What is Tyrosinemia Type 1?

 

An description of Tyrosinemia Type 1 has not been added yet.
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Synonyms for Tyrosinemia Type 1 has not been added yet.
Cause of Tyrosinemia Type 1 has not been added yet.
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Diagnosis of Tyrosinemia Type 1 has not been added yet.
Diagnostic tests of Tyrosinemia Type 1 has not been added yet
Treatments of Tyrosinemia Type 1 has not been added yet.
Prognosis of Tyrosinemia Type 1 has not been added yet.
Tips or Suggestions of Tyrosinemia Type 1 has not been added yet.
References of Tyrosinemia Type 1 has not been added yet.
Tyrosinemia Created by BabyJett
Last updated 7 Jan 2012, 03:48 PM

Posted by BabyJett
7 Jan 2012, 03:48 PM

My son who is 6 months now is being treated for Tyrosinemia Type II. If anyone of you know anything about this metabolic disorder or knows someone who has or you yourself have it I would love to chat.

Facebook Created by fiero_86gt
Last updated 1 Mar 2011, 06:05 PM

Posted by fiero_86gt
1 Mar 2011, 06:05 PM

Hello, I would just like everyone to know that if you are part of Facebook, my husband and I started a Tyrosinemia group on there. It it open to anyone dealing with Tyrosinemia, Family, Friends, Self, etc. We already have well over 100 members.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Tyrosinemia

Created by BabyJett | Last updated 7 Jan 2012, 03:48 PM

Facebook

Created by fiero_86gt | Last updated 1 Mar 2011, 06:05 PM


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