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Susac's syndrome

What is Susac's syndrome?

Susac's syndrome is a rare disease affecting small blood vessels in the body characterized by encephalopathy, branch retinal artery occlusions, and hearing loss.

 

Susac's syndrome is a rare disease affecting small blood vessels in the body characterized by encephalopathy, branch retinal artery occlusions, and hearing loss.
Acknowledgement of Susac's syndrome has not been added yet.
Prevalence Information of Susac's syndrome has not been added yet.
Synonyms for Susac's syndrome has not been added yet.
Cause of Susac's syndrome has not been added yet.
Symptoms for Susac's syndrome has not been added yet.
Diagnosis of Susac's syndrome has not been added yet.
Diagnostic tests of Susac's syndrome has not been added yet
Treatments of Susac's syndrome has not been added yet.
Prognosis of Susac's syndrome has not been added yet.
Name Description
mistynz When you get diagnosed don't panic! My family looked it up on Google and there was great alarm at what they read. My course has followed a much more pleasant one than many of the ones they read would have you believe!
References of Susac's syndrome 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 am a 41 year old female with desemmated mac
I am a 27 year old girl, and imgot susac syndrome at 25.
Sent to site after talking to a friend, because my daughter was diagnosed with Susac's syndrome.

 

Ada Tony

 

My sister has a rare disorder and I am trying to find anyone else with it as a way to not only help her, but so that we can help each other. She has Susac Syndrome.

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