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Moebius Syndrome

What is Moebius Syndrome?

Moebius Syndrome is a rare congenital neurological disorder characterized by facial paralysis and the inability to move the eyes from side to side.

 

Moebius Syndrome is a rare congenital neurological disorder characterized by facial paralysis and the inability to move the eyes from side to side.
Acknowledgement of Moebius Syndrome has not been added yet.
Prevalence Information of Moebius Syndrome has not been added yet.
Synonyms for Moebius Syndrome has not been added yet.
Cause of Moebius Syndrome has not been added yet.
Symptoms for Moebius Syndrome has not been added yet.
Diagnosis of Moebius Syndrome has not been added yet.
Diagnostic tests of Moebius Syndrome has not been added yet
Treatments of Moebius Syndrome has not been added yet.
Prognosis of Moebius Syndrome has not been added yet.
Tips or Suggestions of Moebius Syndrome has not been added yet.
References of Moebius Syndrome has not been added yet.
Is anyone using this? Created by nurse0624
Last updated 8 Dec 2013, 03:00 PM

Posted by nurse0624
8 Dec 2013, 03:00 PM

What symptoms does your child or you have that correlate with the disease and what abnormalities if any concurred with the disease? What treatments are being used? What has proved helpful? what wasnt? What are good resources, doctors, etc?

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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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Is anyone using this?

Created by nurse0624 | Last updated 8 Dec 2013, 03:00 PM


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