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Hereditary Fructose Intolerance

What is Hereditary Fructose Intolerance?

Hereditary Fructose Intolerance is a rare genetic disorder caused by a deficiency of liver enzymes that metabolise fructose.

 

Hereditary Fructose Intolerance is a rare genetic disorder caused by a deficiency of liver enzymes that metabolise fructose.
Acknowledgement of Hereditary Fructose Intolerance has not been added yet.
Prevalence Information of Hereditary Fructose Intolerance has not been added yet.
Synonyms for Hereditary Fructose Intolerance has not been added yet.
Cause of Hereditary Fructose Intolerance has not been added yet.
Symptoms for Hereditary Fructose Intolerance has not been added yet.
Diagnosis of Hereditary Fructose Intolerance has not been added yet.
Diagnostic tests of Hereditary Fructose Intolerance has not been added yet
Treatments of Hereditary Fructose Intolerance has not been added yet.
Prognosis of Hereditary Fructose Intolerance has not been added yet.
Tips or Suggestions of Hereditary Fructose Intolerance has not been added yet.
References of Hereditary Fructose Intolerance has not been added yet.
Clinically Diagnosed? Created by khavlovi
Last updated 17 Apr 2012, 06:45 PM

Posted by khavlovi
17 Apr 2012, 06:45 PM

Hi-just wondering what is the best way to get clinically diagnosed for this? I am certain i have this, just need to make it official.

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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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Clinically Diagnosed?

Created by khavlovi | Last updated 17 Apr 2012, 06:45 PM


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