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Usher syndrome

What is Usher syndrome?

Usher syndrome is a rare genetic disorder characterized by deaf-blindness due to a genetic mutation.

 

Usher syndrome is a rare genetic disorder characterized by deaf-blindness due to a genetic mutation.
Acknowledgement of Usher syndrome has not been added yet.
3.5http://www.orpha.net
Synonyms for Usher syndrome has not been added yet.
Cause of Usher syndrome has not been added yet.
Symptoms for Usher syndrome has not been added yet.
Diagnosis of Usher syndrome has not been added yet.
Diagnostic tests of Usher syndrome has not been added yet
Treatments of Usher syndrome has not been added yet.
Prognosis of Usher syndrome has not been added yet.
Tips or Suggestions of Usher syndrome has not been added yet.
References of Usher syndrome has not been added yet.
DeafBlind in Israel Created by itamart
Last updated 22 Jan 2013, 08:41 AM

Posted by itamart
22 Jan 2013, 08:41 AM

Hello to all the readers, I would like to invite you to see videos, photos, and articles about Deafblind people from Israel! there is a facebook, you can see details about Usher syndrom and people who dealing with deafblindness, pictures of activities they took part, some personal stories and videos. please make Like! and comment (: The open group in facebook: [url]http://www.facebook.com/deaf3blind[/url] our website: [url=http://cdb.org.il/english/]Beth David Institute | Center For Deaf-Blind Persons – Beth David Institute[/url] have a beautiful day!

Community External News Link
Title Date Link
Peter Alexander’s Sister Rebecca Recalls Progressive Vision and Hearing Loss Since Age 12 Due to Rare Disease 05/18/2024
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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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DeafBlind in Israel

Created by itamart | Last updated 22 Jan 2013, 08:41 AM


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