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Erdheim Chester Disease

What is Erdheim Chester Disease?

Erdheim Chester Disease is a rare form of non-Langerhans-cell histiocytosis.

 

Erdheim Chester Disease is a rare form of non-Langerhans-cell histiocytosis.
Acknowledgement of Erdheim Chester Disease has not been added yet.
178.0http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases.pdf
Synonyms for Erdheim Chester Disease has not been added yet.
Cause of Erdheim Chester Disease has not been added yet.
Bone pain
Diagnosis of Erdheim Chester Disease has not been added yet.
Diagnostic tests of Erdheim Chester Disease has not been added yet
Treatments of Erdheim Chester Disease has not been added yet.
Prognosis of Erdheim Chester Disease has not been added yet.
Tips or Suggestions of Erdheim Chester Disease has not been added yet.
References of Erdheim Chester Disease has not been added yet.
I need help Created by fausto23
Last updated 10 Jul 2008, 04:43 PM

Posted by fausto23
10 Jul 2008, 04:43 PM

Well i update the information, but i have a problem, i cant write good in english, right now i have a dictionary, please who could translate this, please...

Actualizando la informacion Created by fausto23
Last updated 8 Jul 2008, 05:20 PM

Posted by fausto23
8 Jul 2008, 05:20 PM

Acabo de actualizar el tema sobre esta enfermedad, espero que agreguen o corrijan lo escrito.

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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.

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 need help

Created by fausto23 | Last updated 10 Jul 2008, 04:43 PM

Actualizando la informacion

Created by fausto23 | Last updated 8 Jul 2008, 05:20 PM


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