Usher Syndrome Ireland

05/10/2026

***POSTPONED***
Unfortunately, due to a lack of available ISL interpreters, we sadly have had to postpone tomorrow’s (6th Oct) fully booked ISL Sensory Gardening Workshop.

We have contacted all attendees. If you have a place booked but haven’t seen our email, please check your spam or junk folder. We sincerely regret this unfortunate circumstance, which is beyond our control, and understand how disappointing this news will be.

We are working hard to secure a new date as soon as possible. Everyone who had a place booked will be given the first opportunity to accept a place on the rescheduled date.

Thank you so much for your understanding and patience.



ID: A photo of several potted plants with the text “ISL Sensory Gardening Workshop”. Overlaid text on image reads “Postponed”. Usher Syndrome Ireland logo and by Amgen logo is at the bottom.

28/09/2026

We’re delighted to announce that we have been chosen to be part of the Tesco Community Fund at Tesco Ireland Wexford. 🎉

If you’re shopping at Tesco Wexford between now and the beginning of December, please use your blue token to vote for Usher Syndrome Ireland. It only takes a moment, but every token counts. The more tokens we receive, the greater our share of the Community Fund which will be used to support our Usher community.

Please spread the word and ask your family and friends who shop at Tesco Wexford to use their blue token for Usher Syndrome Ireland too, helping us to collect as many tokens as possible.

A huge thank you to the wonderful member of our community who nominated us at their local Wexford store. We’re so grateful for your support. 💚

Would you like to nominate Usher Syndrome Ireland for your local Tesco store? You can find the nomination link in the comments.

Image 1: A hand holding a Tesco blue token. Text reads: “Tesco Community Fund. Please use your recyclable blue token to vote for Usher Syndrome Ireland at Tesco Wexford.”

Image 2: A photo from Tesco Wexford showing the blue token collection point, with Usher Syndrome Ireland listed on the left.

23/09/2026

We are delighted to announce that our ISL Sensory Gardening Workshop is fully booked! 🌿

You can add your name to the waiting list. If someone can’t attend, we may contact you to offer you a place.

Add Name to Waiting List: https://tinyurl.com/ISLWorkshop

We can’t wait to see those who are joining us, and we look forward to sharing more opportunities with our wider community in the near future!

Power of USH: Empowerment Workshops 2026 is a series of workshops funded by Amgen through the Global Advocate Grant, designed to empower individuals with Usher syndrome and strengthen community connections and voices.



RAREis Amgen Ireland

ID: A photo of several potted plants with the text “ISL Sensory Gardening Workshop”. Overlaid text on image reads “Fully Booked”. Usher Syndrome Ireland logo and by Amgen logo are at the bottom.

19/09/2026

Usher Syndrome Awareness Day

Usher syndrome is a rare genetic condition that causes hearing loss and progressive vision loss. There is currently no cure.

But life can - and does - go on. And on Usher Syndrome Awareness Day, we want to remind you that you are not alone. We are here to support you and your family.

Usher syndrome isn’t always easy. There are challenges, changes and uncertainties along the way, and everyone’s experience is different.

Today, we’re sharing the realities of people living with Usher syndrome and families who know it first-hand - the difficult moments, the adjustments, the frustrations, the resilience, and the things that help along the way.

But we can learn to adapt to the challenges of everyday life with this rare condition as they come. People with Usher syndrome can still pursue their dreams, achieve their goals, build careers, have families, enjoy life and do the things that matter to them.

And we are here to listen, help, cheer and support you and your family every step of the way. 💚



[ Ireland, Rare Disease, Retinitis Pigmentosa ]

17/09/2026

We are delighted to welcome Dr Noor Al-Saffar as the new Research Officer for Usher Syndrome Ireland.

Below, Noor tells us why she took on this new role:

“Hello! My name is Noor Al-Saffar, and I am a resident doctor working in the Northwest of England, having qualified last year. I am looking forward to starting my role as Research Officer for Usher Syndrome Ireland, as well as leading the Steering Group Committee.

I have a keen interest in paediatrics and rare disease. In medical school, we are told all too often, ‘When you hear hoofbeats, think horses, not zebras’ – a phrase which I feel can take away from the enormity of rare disease diagnoses and the impact they have on patients and their loved ones.

For this reason, I am really looking forward to working with USI and supporting the charity’s already brilliant work with individuals with Usher syndrome, while exploring the role we can play in advancing care, namely through building a patient registry.

I am looking forward to this opportunity and hoping to connect with many of you along the way!”

Welcome to the team, Noor, we’re delighted to have you with us! 🦓

Image description: Noor is posing in her graduation gown, holding a bunch of flowers and beaming proudly at the camera. Logo for Usher Syndrome Ireland is placed at the bottom.

14/09/2026

🌱 ISL Sensory Gardening Workshop

Come and enjoy a relaxed morning of sensory gardening with Inspired by Nature, meeting other people with Usher syndrome, and share thoughts in a group discussion.

After the workshop, participants will receive a voucher for lunch at Mad Brothers Café.

When and where:
• Date: Tuesday, 06 October 2026
• Time: 10.30am – 1.30pm
• Location: Deaf Village Ireland

This workshop is for ISL users with Usher syndrome. ISL interpreters will be present throughout the workshop.

Important Information:
Places are limited and booking is essential.

Please register here: https://tinyurl.com/ISLWorkshop
You can also scan the QR code in the image.

Have a question or need help with registration? Contact us at [email protected]

This workshop is hosted by Usher Syndrome Ireland with funding from the (RAREis ) initiative from Amgen. We are very grateful to Amgen for their support, which has made this workshop possible.

Image description one A photo of several potted plants with the text “ISL Sensory Gardening Workshop”. An arrow indicates that there is another image to swipe to. The Usher Syndrome Ireland logo and by Amgen logo are at the bottom.

Image description two: The image provides information about the ISL Sensory Gardening Workshop, including the date, time, location, who the workshop is for, and how to register.

11/09/2026

Usher Syndrome Ireland needs your help

We are urgently working to build a clearer picture of the Usher syndrome community across the island of Ireland including how many people are living with Usher syndrome, where they are based, the different types of Usher syndrome, and the support needs of individuals and families.

This information is particularly important as we work to secure the funding needed to continue providing support, resources, and advocacy for the community.

If you are:
• living with Usher syndrome;
• a parent or carer of a child with Usher syndrome; or
• a family member of someone with Usher syndrome,

please take a few minutes to complete this short form to help us map the Usher syndrome community across Ireland. Complete the form here: https://tinyurl.com/MappingUSH

The information collected will not only help us advocate for better services and support but will also help demonstrate to pharmaceutical companies and researchers that there is a real and established Usher syndrome community here in Ireland that could benefit from future research and clinical trial opportunities.

Usher Syndrome Ireland would like to reassure you that any personal information provided will be kept strictly confidential, stored securely, and will never be shared with anyone else without your permission.

It may seem like a small thing, but every response truly does make a difference. Thank you so much for taking the time to complete the form and for supporting us. If you’ve already submitted your response, we’re incredibly grateful for your help.

If you have any questions, please contact Deborah at [email protected].

07/09/2026

27/08/2026

We’re asking for your help with something really important.

Recent feedback from funding applications has made it clear that we need to provide stronger and clearer evidence of the Usher syndrome community across the island of Ireland. This is particularly important as we work to secure the funding needed for Usher Syndrome Ireland to continue.

We are asking all those living in Ireland and Northern Ireland with a connection to Usher syndrome to take a few minutes to complete this short form. It may seem like a small thing, but every response really does matter.

If you are a teacher, support worker, healthcare professional, family member, friend, or anyone else who knows someone with Usher syndrome, we would really appreciate it if you could share this form with them or their family.

By taking part, you’ll help us demonstrate how many people with Usher syndrome and their families we support, where people are living across the island of Ireland, and the different types of Usher syndrome and support needs within our community. It will also help us advocate for better services and support for you and your family and demonstrate to pharmaceutical companies and researchers that there is a real community here that could benefit from clinical trials and research opportunities.

We’d would also like to reassure you that your personal information will be kept strictly confidential and stored securely, and it will never be shared with anyone else without your permission.

Thank you. If you have any question, please reach out to us at [email protected]

Form link: https://tinyurl.com/MappingUSH



Image description: Dublin city at dusk, overlooking the River Liffey. The image includes a caption that reads, “We need your help. It’s really urgent.”