WHAT IS USHER SYNDROME?
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 charity founded by people with Usher syndrome, for people with Usher syndrome. We understand the emotions and challenges, the uncertainties, and the need for connection. That’s why we’re here: to support, to inform, to empower, and to make sure no one faces this journey alone.
We raise awareness so more people understand Usher syndrome. We fund research to drive progress. We advocate for those affected, making sure their voices are heard. And we build a community, one that supports each other, shares experiences, and creates change.
Together, we are building a strong, informed, and empowered community.
Tears May Hold the Key to Diagnosis and Treatment of Usher Syndrome - Pilot Study co-funded by Usher Syndrome Ireland
Connecting Parents, Strengthening Support - Blog
USH in Research - Latest Updates
USH CONNECT 2024 - Usher Syndrome Ireland welcome the USH community to its second USH Connect event.
New Awareness Packs for Healthcare Providers Launched
USHER SYNDROME IRELAND APPEARS ON IRELAND AM