By signing up, you become part of a strong global network that supports research, connects the community, and helps speed up progress toward new treatments.
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That’s why genetic research and access to rare genes are more important than ever.

You can help scientists unlock the mysteries of our rare genes. Join the USH Trust—the largest international database of people with Usher syndrome.
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Since these changes don’t happen often, scientists need more research to understand them. The more we learn, the closer we get to new treatments and a better quality of life.

Studying rare genes can lead to important medical discoveries for the Usher syndrome community.
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Not all rare genes cause problems. Some changes can be helpful, like making a person resistant to certain diseases. But others, like those linked to Usher syndrome, can bring serious challenges.

Why do rare genes matter? Because they are hard to study, diagnose, and treat.
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These changes create diversity, but they can also cause health conditions.

For people with Usher syndrome, specific gene changes lead to combined hearing and vision loss, and even balance issues. These rare genetic changes affect how the body works and can have a big impact on daily life.
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Many people might say, "genes that are rare." That’s true, but there’s more to it. Are the genes themselves rare, or do the changes in these genes make them rare?

The second answer is correct. All humans share the same genes, but small genetic changes, called mutations, make each of us unique.
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Your Rare Genes connect you to a global network - a powerful community bound together by shared experiences.

Rare Genes transforms a medical diagnosis into a movement, redefining what it means to be rare.
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A diagnosis can lead to more questions, difficult emotions, and uncertainty - but you are not alone. There is an entire community ready to support you. The Usher Syndrome Coalition is here to help you navigate the next steps.
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At its core, the genes related to Usher syndrome are Rare Genes.

But this name is also about reclaiming this diagnosis. Over the years, we've heard countless stories from the #USHCommunity about receiving the USH diagnosis - whether for themselves or a loved one - and what followed.
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This week, we're debuting the Rare Genes science education series, exploring genetics and Usher syndrome.

This is just the beginning - there's so much more in the works, and we can't wait to share it with you in the months ahead. Stay tuned!