Where to Start: Resources and More
Welcome to the Usher syndrome community.
Whether you have Usher syndrome, or you have a friend or family member with Usher syndrome, you've come to the right place.
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USH Ambassadors are volunteers who are knowledgeable about Usher syndrome and serve as the Coalition's point of contact in their state or country.
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You are not alone. Other families are on this journey too. There is a community of parents who have "been there," survived and thrived.
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The goal of this resource is to connect young adults with Usher syndrome with each other, provide advice on college, starting your career, self-advocacy, and more.
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Ideas, tips, tricks, and strategies for living your best life
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Supporting the mental well-being of individuals with Usher syndrome: resources, community, and expert insights in one place.
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The USH Blog contains posts by individual authors on a variety of topics that impact the Usher syndrome community.
Resource and Technology News:
Learn how hearing health impacts well-being for people with Usher syndrome. Discover the importance of regular hearing tests, proper maintenance of assistive hearing equipment, and hearing health awareness improve communication, safety, and quality of life.
Summary of research updates for each Usher syndrome type at ARVO 2025.
