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Hemochromatosis

What is Hemochromatosis?

Hemochromatosis is a rare hereditary disease characterized by excessive absorption of dietary iron.

 

Hemochromatosis is a rare hereditary disease characterized by excessive absorption of dietary iron.
Acknowledgement of Hemochromatosis has not been added yet.
Prevalence Information of Hemochromatosis has not been added yet.
Synonyms for Hemochromatosis has not been added yet.
Cause of Hemochromatosis has not been added yet.
Symptoms for Hemochromatosis has not been added yet.
Diagnosis of Hemochromatosis has not been added yet.
Diagnostic tests of Hemochromatosis has not been added yet
Treatments of Hemochromatosis has not been added yet.
Prognosis of Hemochromatosis has not been added yet.
Tips or Suggestions of Hemochromatosis has not been added yet.
References of Hemochromatosis has not been added yet.
Forum Members Created by happyhodgepodge
Last updated 25 Sep 2015, 01:30 PM

Posted by happyhodgepodge
25 Sep 2015, 01:30 PM

Anybody active here????

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Clinical Trials


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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Collecting Diseases Like Curios

 

I was diagnosed with psoriasis by my first pediatrician at 6 wks old. It was in my scalp, eyebrows, and ear canals, (SUCH A MADDENING ITCH!!) By the time I...

I was diagnosed with Hereditary Hemochromatosis in 2007.

 

I am British and live in France.
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I have a niece who has just discovered that she has hemochromatosis after years of agonizing over mysterious symptoms doctors couldn't find a reason for. I want to learn all I can about the disease...

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Created by happyhodgepodge | Last updated 25 Sep 2015, 01:30 PM


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