Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

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
Community Resources
Title Description Date Link

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.

Community Leaders

 

Expert Questions

Ask a question


Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

DeafBlind in Israel

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


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.