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:
Most people with Usher syndrome are familiar with the term retinitis pigmentosa. But another term can come up later, often as a surprise: cystoid macular edema, or CME. If you have heard this term and are not sure what it means, or if your central vision has changed and you do not know why, this article is for you.
Article on the Awesome Moms With USH group for those experiencing Usher syndrome and motherhood, the support network, stories, and how to join.
