What is Usher Syndrome?
A Life Between Sight and Sound
Usher syndrome (USH) is a rare genetic condition that affects both hearing and vision. Its main symptoms includes 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. You can help us to build a clearer picture of our community by completing this form: Mapping Usher Syndrome across Ireland
Find more information on Usher syndrome here.
Who We Are
We are a peer-led charity supporting people with Usher syndrome and their families across Ireland.
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. 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.
Latest News
New Research Officer
New Research Officer
New Research Officer
We are delighted to welcome Dr Noor Al-Saffar as the new Research Officer for Usher Syndrome Ireland.
Tesco Community Fund
New Research Officer
New Research Officer
We have been chosen to be part of the Tesco Community Fund from now until the beginning of December at Tesco Wexford!
ISL Workshop
New Research Officer
ISL Workshop
Coming Up: Sensory gardening workshop with Inspired by Nature for those with Usher syndrome and communicate in ISL.