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Tips for Parents

Join the USH Trust registry. By registering, you and your child become part of an international community. You can also be among the first to know about research opportunities. Visit to sign up. 

Join the community. You are not alone. There are many ways to become part of a community of support that understands your experiences and can share theirs. The USH Blue Book connects individuals and families affected by Usher syndrome via email. This community is a tremendous resource when you have questions, as well as a great resource for tips and positive anecdotes that can provide encouragement.

Our annual USH Connections Conference provides a venue to meet other families and individuals with Usher syndrome face-to-face, while learning about the latest research. The location of the conference changes every year to encourage people from different parts of the country, and the world, to participate.

Take care of yourself. The diagnosis may still be fresh in your mind. You may be overwhelmed by details or you may be propelled to do everything you can by trying to research all the latest information, doctors, clinics, etc. Totally understandable… but make sure you make self-care a priority. Taking time for yourself to recharge and renew is not only essential for your emotional and physical well-being, but it allows you to better support your child and family.

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