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Kearns-Sayre Syndrome

What is Kearns-Sayre Syndrome?

Kearns-Sayre Syndrome is a rare disorder caused by a 5,000 base deletion in the mitochondrial DNA.

 

Kearns-Sayre Syndrome is a rare disorder caused by a 5,000 base deletion in the mitochondrial DNA.
Acknowledgement of Kearns-Sayre Syndrome has not been added yet.
2.0http://www.orpha.net
Synonyms for Kearns-Sayre Syndrome has not been added yet.
Cause of Kearns-Sayre Syndrome has not been added yet.
Symptoms for Kearns-Sayre Syndrome has not been added yet.
Diagnosis of Kearns-Sayre Syndrome has not been added yet.
Diagnostic tests of Kearns-Sayre Syndrome has not been added yet
Treatments of Kearns-Sayre Syndrome has not been added yet.
Prognosis of Kearns-Sayre Syndrome has not been added yet.
Tips or Suggestions of Kearns-Sayre Syndrome has not been added yet.
References of Kearns-Sayre Syndrome has not been added yet.
Curious about other KSS patients Created by SusanPedue
Last updated 21 Jun 2013, 05:49 PM

Posted by diannamaria1
21 Jun 2013, 05:49 PM

are you still there Susan?

Posted by SusanPedue
14 May 2009, 04:05 PM

I would like to get to know other KSS patients and start chatting and supporting one another. Susan

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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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Curious about other KSS patients

Created by SusanPedue | Last updated 21 Jun 2013, 05:49 PM


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