Our purpose is to see children and families living with Usher syndrome love their lives.

Our mission is to empower the Usher community through support, connection and knowledge.  

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About Usher Syndrome

Usher syndrome is a genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction. The loss of vision is caused by an eye disease called Retinitis Pigmentosa (RP), which affects the light-sensitive area of tissue on the back of the eye (the retina).

About Usher Syndrome

Usher syndrome is a genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction. The loss of vision is caused by an eye disease called Retinitis Pigmentosa (RP), which affects the light-sensitive area of tissue on the back of the eye (the retina).

Get Support

From inspiring personal Usher stories, to a range of practical resources, our Support section will give you information and guidance on a range of support services available nationally for children with Usher syndrome, as well as some helpful facts about the National Disability Insurance Scheme.

Get Support

From inspiring personal Usher stories, to a range of practical resources, our Support section will give you information and guidance on a range of support services available nationally for children with Usher syndrome, as well as some helpful facts about the National Disability Insurance Scheme.

Latest News

University of Melbourne

Research Project. Are you the parent or carer of a child living with Usher Syndrom Type 1?

Save the date

USH2022 Connections Conference will be a hybrid event in Austin, Texas, July 8th-9th, 2022.

Community Service Rotary Award

Emily Shepard, winner of the Club’s Sir John Reid Community Service Award for 2021.

Return to onsite learning

Strategies to support students with a hearing loss and their teachers.

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