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WHAT IS USHER SYNDROME?

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A Life Between Sight and Sound

Usher syndrome (USH) is a rare genetic condition that primarily affects hearing and vision. Its main symptoms include sensorineural hearing loss and retinitis pigmentosa (RP), a progressive eye disease that causes gradual vision loss, leading to night blindness and tunnel vision. Some individuals with Usher syndrome may also experience balance difficulties due to vestibular issues.

It is the leading genetic cause of combined hearing and vision loss, also known as dual-sensory loss or deafblindness, affecting an estimated 400,000 people worldwide.

In Ireland, it is believed that between 260 and 350 people are living with this condition. Find more information on Usher syndrome here.

Who We Are

We are Usher Syndrome Ireland, a peer-led charity supporting people with Usher syndrome and their families across Ireland.

We are led by people with Usher syndrome ourselves. We understand what it’s like to live with progressive hearing and vision loss, the uncertainty, the adjustments, and the emotional impact over time. We also know how important it is to connect with others who truly understand that experience.

That shared understanding shapes everything we do. We offer peer support, trusted information for individuals, families, and professionals, and opportunities for connection and inclusion.

We raise awareness so more people understand Usher syndrome and the impact of living with progressive dual sensory loss. We support research and learning to help drive progress. We advocate to ensure the voices of those with Usher syndrome are heard. And we build an inclusive community, one that supports its members, shares experiences, and reduces isolation.

Together, we are building a strong, informed, and empowered Usher syndrome community.