If you would like to learn more about Usher syndrome, its progression and genetic causes, visit the National Institute on Deafness and Other Communication Disorders website below:
If you or someone you know has recently been diagnosed with Usher syndrome, the Usher Syndrome Coalition is dedicated to helping families cope with Usher syndrome. Their goal is to provide hope to families with Usher syndrome.
The Usher Syndrome Coalition also manages a secure registry that allows individuals with Usher syndrome and their family members and caregivers to provide contact information so they will be advised as potential treatments become available. The registry is voluntary and secure. In keeping with HIPAA (Health Information Portability and Accountability Act) privacy guidelines, information that may allow viewers of the data to identify an individual is accessible only on a need to know basis by the administrators of the registry.