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Toriello-Carey Syndrome

What is Toriello-Carey Syndrome?

Toriello-Carey Syndrome is a rare disorder affecting around 40 people. It is a genetic disorder that causes mutation of the cells in the center of the body.

 

Toriello-Carey Syndrome is a rare disorder affecting around 40 people. It is a genetic disorder that causes mutation of the cells in the center of the body.
Acknowledgement of Toriello-Carey Syndrome has not been added yet.
Prevalence Information of Toriello-Carey Syndrome has not been added yet.
Synonyms for Toriello-Carey Syndrome has not been added yet.
It is caused by a rare gene both parents must carry. They have a one in four chance of having a chid affected by this
The symptoms include Agenesis of the Corpus Collosum, Pierre robin Sequence,aomolies in the facial features, and may include other symptoms which vary per child.Toriello carey Syndrome affects boys on a more severe basis.
Toriello Carey Syndrome is a genetic disorder that is unable to be detected using chromosome testing.
Diagnostic tests of Toriello-Carey Syndrome has not been added yet
You must treat the symptoms that arise.
Unknown
Tips or Suggestions of Toriello-Carey Syndrome has not been added yet.
References of Toriello-Carey Syndrome has not been added yet.
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Cords registry

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.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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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Community User List

I have a son, age 17,who was diagnosed with Toriello Carey Syndrome age at 5. I also have a grand son, age 6, who was diagnosed with DiGeorge Syndrome at age 1 week. I am a nurse. I work in home...
I had my 1st son at 21, he died aged 4, undiagnosed with Toriello - Carey, I was 25. I have had genetics testing & discovered that doctors in Ireland treated each problem as it arose. It was caused...
I am a recently remarried mother of three grown children. Both of my sons have Toriello-Carey Syndrome and look much younger than their 18 and 22 years of age. I cared for my sons 24/7 until my...

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