Usher Syndrome Awareness Day

Usher Syndrome Awareness Day is observed annually on the third Saturday of September. In 2026, this date falls on September 19. This day is dedicated to raising global awareness about Usher syndrome, a rare genetic condition that causes combined hearing loss and progressive vision loss.

History of Usher Syndrome Awareness Day

The Usher Syndrome Coalition worked with United States Senator Ron Wyden to enter the third Saturday of September into the Congressional Record on July 29, 2015, formally establishing Usher Syndrome Awareness Day. This recognition was a major step for the Usher syndrome community, which had long sought a dedicated day to highlight the condition and its impact on more than 400,000 people worldwide.

After the federal recognition, advocacy efforts expanded to state and local governments. In 2015, Coalition Board Director Danay Trest submitted a proclamation request to Mississippi Governor Phil Bryant, who signed the first state-level proclamation for Usher Syndrome Awareness Day. Since then, community members have successfully obtained proclamations at all levels of government across the United States and around the world, helping to bring visibility to this little-known condition.

Why is Usher Syndrome Awareness Day important?

Usher syndrome affects approximately 400,000 people globally and is the leading genetic cause of combined deafness and blindness. Despite its prevalence, public awareness remains limited, leading to delayed diagnosis, misdiagnosis, and lack of access to services and support for those affected.

Raising awareness helps address these challenges by educating the public, healthcare providers, and policymakers about the condition. Increased visibility can lead to earlier diagnosis, better support systems, and more research funding for treatments and ultimately a cure.

• Usher syndrome causes hearing loss, progressive vision loss from retinitis pigmentosa, and balance issues due to vestibular dysfunction.
• There are three clinical types (Type 1, Type 2, and Type 3) and at least ten genetic subtypes determined by DNA testing.
• The condition has no impact on intellectual abilities, yet stigma and misunderstanding persist.
• Limited awareness can result in delayed diagnosis, lack of job training, and negative effects on daily living and mental health.
• Uniting the global community on this day helps spread knowledge and advocate for those affected.

How to Observe Usher Syndrome Awareness Day

Individuals and organizations can participate by requesting official proclamations from local or state governments, as the Usher Syndrome Coalition provides sample language and guidance for doing so. Sharing information on social media using official hashtags and educational materials helps spread the word about the condition.

Those who want to go further can support patient advocacy groups like the Usher Syndrome Coalition or the Usher Syndrome Society. Hosting or attending awareness events, such as the Times Square billboard takeovers or community gatherings, is another powerful way to honor the day and show solidarity with the Usher syndrome community.

• Request a proclamation from your local government using the coalition's sample template.
• Share facts about Usher syndrome on social media to educate your network.
• Donate to organizations funding research and support for people with Usher syndrome.
• Attend or organize a local awareness event, such as a walk or informational session.
• Learn about the three types of Usher syndrome and share that knowledge with others.

Usher Syndrome Awareness Day Dates