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Coats Disease

What is Coats Disease?

Coats Disease is a rare eye disorder characterized by weak blood vessels behind the retina leading to full or partial blindness.

 

Coats Disease is a rare eye disorder characterized by weak blood vessels behind the retina leading to full or partial blindness.
Acknowledgement of Coats Disease has not been added yet.
2.0http://www.orpha.net
Synonyms for Coats Disease has not been added yet.
Congenital Disease
First noticed by the presence of a "white spot": the absence of normal red-eye when a photo is taken with a flash. Instead of red eye a white or gold spot covers the pupil of the eye.
Diagnosis of Coats Disease has not been added yet.
Diagnostic tests of Coats Disease has not been added yet
Laser treatment to stop the exudate from the blood vessels. Also, Cryotherapy if there is too much fluid in the eye to perform laser surgery. A vitrectomy (incision into the sclera and all fluid in the eye is drained, then replaced with oil or gas to push the retina back into place) is also an option.
Depending on the stage of the disease, sight can be preserved/restored.
Tips or Suggestions of Coats Disease has not been added yet.
References of Coats Disease has not been added yet.
Raising awareness in media Created by FullHouse
Last updated 21 Feb 2011, 02:44 PM

Posted by FullHouse
21 Feb 2011, 02:44 PM

Hello, I work for Full House magazine, a national women’s weekly real life magazine. I work on the health pages, and each week I talk to someone (or a parent on behalf of their child) about their condition. It is a great way of raising awareness about the condition, warning people of the symptoms to look out for, how it affects day-today life etc If you (or your child) suffers from Muckle Wells and you’d like to appear in the magazine please email me on dawn.murden@fullhousemagazine.co.uk and then we can chat further.

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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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Raising awareness in media

Created by FullHouse | Last updated 21 Feb 2011, 02:44 PM


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