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Leber's Congenital Amaurosis

What is Leber's Congenital Amaurosis?

Leber's Congenital Amaurosis is a rare inherited eye disorder.

 

Leber's Congenital Amaurosis is a rare inherited eye disorder.
Acknowledgement of Leber's Congenital Amaurosis has not been added yet.
2.5http://www.orpha.net
Synonyms for Leber's Congenital Amaurosis has not been added yet.
Cause of Leber's Congenital Amaurosis has not been added yet.
Symptoms for Leber's Congenital Amaurosis has not been added yet.
Diagnosis of Leber's Congenital Amaurosis has not been added yet.
Diagnostic tests of Leber's Congenital Amaurosis has not been added yet
Treatments of Leber's Congenital Amaurosis has not been added yet.
Prognosis of Leber's Congenital Amaurosis has not been added yet.
Tips or Suggestions of Leber's Congenital Amaurosis has not been added yet.
References of Leber's Congenital Amaurosis has not been added yet.
Leber's Congenital Amaurosis Film Created by monikaminski
Last updated 15 Sep 2011, 01:50 PM

Posted by monikaminski
15 Sep 2011, 01:50 PM

Hi, my friend and I recently entered the Genomics BC film contest in which we had to create a short film about genetics geared towards high school students. We chose to focus on gene therapy for our film, and through our research we had a chance to learn more about Leber's Congenital Amaurosis. Since there have been clinical trials with positive results in this field we decided to focus our film around this disease. Now there are a few days left of voting in which we are hoping to win the viewers choice award. Would you mind taking a minute to view the film at: http://www.youtube.com/watch?v=lXsmtGHdOgg Then if you could just log in and hit the LIKE button on youtube in order to vote! Thank you so much for you help! Monica Kaminski

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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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Leber's Congenital Amaurosis Film

Created by monikaminski | Last updated 15 Sep 2011, 01:50 PM


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