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. 

  • USH Ambassadors are volunteers who are knowledgeable about Usher syndrome and serve as the Coalition's point of contact in their state or country.

  • You are not alone. Other families are on this journey too. There is a community of parents who have "been there," survived and thrived.

  • 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.

  • Ideas, tips, tricks, and strategies for living your best life

  • Supporting the mental well-being of individuals with Usher syndrome: resources, community, and expert insights in one place.

  • The USH Blog contains posts by individual authors on a variety of topics that impact the Usher syndrome community.

Resource and Technology News:

Article on the Awesome Moms With USH group for those experiencing Usher syndrome and motherhood, the support network, stories, and how to join.

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.