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Aceruloplasminemia

What is Aceruloplasminemia?

Aceruloplasminemia is a rare iron metabolism disorder characterized by progressive neurodegeneration of the retina and basal ganglia, and diabetes mellitus.

 

Aceruloplasminemia is a rare iron metabolism disorder characterized by progressive neurodegeneration of the retina and basal ganglia, and diabetes mellitus.
Acknowledgement of Aceruloplasminemia has not been added yet.
0.05http://www.orpha.net
Synonyms for Aceruloplasminemia has not been added yet.
Cause of Aceruloplasminemia has not been added yet.
Symptoms for Aceruloplasminemia has not been added yet.
Diagnosis of Aceruloplasminemia has not been added yet.
Diagnostic tests of Aceruloplasminemia has not been added yet
Treatments of Aceruloplasminemia has not been added yet.
Prognosis of Aceruloplasminemia has not been added yet.
Tips or Suggestions of Aceruloplasminemia has not been added yet.
References of Aceruloplasminemia has not been added yet.
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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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I have several rare disorders, and many secondary disorders that are rare. I have autoimmune, mitochondrial disorder, immune dificiency, causing, crohn's sprue, dopa responsive panhypopituitarism,...

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