Finding useful health information on the Internet can be difficult, but we’re here to help. This page gathers quality information from trusted sources. You can learn more about the disease, visit handpicked websites, and find resources to help you in your daily life. Need more information? Click the menu on the left to find more!
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Medical Disclaimer
The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
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Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
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USH Talks - Video Presentations on Usher syndrome
This video podcast delivers the latest in research developments and community stories directly to you.
Usher Syndrome Blog
The USH Blog contains posts by individual authors on a variety of topics that affect the Usher syndrome community.
USH Trust Registry
The USH Trust is the largest international Usher syndrome registry in the world. It is a confidential, simple and secure place for everyone with Usher syndrome to sign up, be connected, and be informed of clinical trials and relevant studies.