A cut-out image showing the contents of the USH Awareness Pack, including leaflets, booklets, glasses, stickers, and QR cards. Above the image is the text: “I’ve never heard of Usher syndrome - can you explain what it is to me?”

“I’ve never heard of Usher syndrome - can you explain what it is to me?”

This is still happening in healthcare. We’re working to change that. Get in touch for a free HCP USH Awareness Pack (Ireland & Northern Ireland). We also offer talks & training.

#UsherSyndrome #HealthcareAwareness #SpeirGorm

Daughter runs Boston Marathon to honor dad with rare vision disorder In our “Why I'm Running” series, Boston Marathon runners share what's inspiring them to make the 26.2-mile trek from Hopkinton to Boston.

"Three years ago, my dad was diagnosed with Usher syndrome (type 2C), a rare genetic disease that affects both hearing and vision. Deaf since the age of two, he began experiencing rapidly worsening vision." www.boston.com/community/bo... #bostonmarathon #ushersyndrome #keeplistening

Carol Brill is standing to the left of a research poster on display. She has short blonde hair and is wearing an Usher Syndrome Ireland t-shirt. The title of the poster is “Voices Rarely Heard: Patient-Led Research Readiness in Usher Syndrome”.

Last Saturday, we were delighted to attend University College of Dublin for RAINFEST 2026 & to meet with others in this rare disease space. Carol, Chair of USI, presented her poster on the findings of a scoping study examining the feasibility of an USH patient registry.

#UsherSyndrome #UCD

TELLERS UNTOLD

#UsherSyndrome #Blind #Deaf #DeafBlind
www.tellersuntold.com share.google/q2fZNhtunNMB...

A photo of myself on the train looking tired!!

Today, on my way to London to host an #UsherSyndrome patient information day for 250 people living with this condition. @moorfieldsbrc.bsky.social @ucleye.bsky.social @moorfields.bsky.social A little bleary-eyed, stayed up late preparing for the day!

Welcomed the team from #SepulBio, who are sponsoring the antisense oligonucleotide #Ultevursen clinical trial for #UsherSyndrome, to @moorfields.bsky.social @moorfieldsbrc.bsky.social for a tour of our Clinical Research Facility.

A smiling woman wearing glasses is using a laptop on a table. Caption reads, “USH Meetups • 26 March • 7:30pm • Online. There is a QR code next to the text.

Live in Ireland and have Usher syndrome, or perhaps a family member does? Then come along to our next USH Meetup, via Zoom, on Thurs, 26th March for a friendly chat with others in the community.

Sign up here: 040dd814.sibforms.com/serve/MUIFAD...

#SpeirGorm #UsherSyndrome #Ireland

Tänän on harvinaisten sairauksien päivä :blobwave:

#UsherinOireyhtyma #UsherSyndrome

Usher Syndrome Information Day 2026 Join us in person for Usher Syndrome Info Day 2026 to learn, share, and connect with the community!

We are hosting an #UsherSyndrome Patient #Information Day on Sat 21st March in London with @moorfieldsbrc.bsky.social.

Its free and will be hugely informative to those touched by this rare condition. Please register to attend using this link👉🏼 www.eventbrite.com/e/usher-synd...

Hey Krista! Thanks for Joining us on The Blind Chick. Can't wait to have you back!

#TheBlindChick #UsherSyndrome #Aftersight

Pyrographer With Usher Syndrome Wins National Rare Artist Award Texas pyrographer Krista Webb, living with Usher syndrome, named a national Rare Artist awardee by the EveryLife Foundation.

#Pyrographer With Usher Syndrome Wins National #RareArtist Award - Texas #pyrographer Krista Webb, living with #UsherSyndrome, named a national Rare Artist awardee by the #EveryLifeFoundation - www.disabled-world.com/communicatio...

Deafblind Bath woman counting down to Mount Everest challenge Karolina Pakenaite, 29, has Usher syndrome which causes progressive hearing and sight loss.

29-year-old Karolina Pakenaite lives with progressive #HearingLoss and #SightLoss due to #UsherSyndrome - and she's hoping to be the first #deafblind person to climb Mount Everest. ⛰️ #BlindNewWorld

(Story via BBC ⬇️)

First patient with hereditary deafblindness treated with new experimental gene therapy - Possible prevention of blindness in hereditary deafblindness 27 January 2026

“This is a goosebumps moment for our Radboudumc Usher expertise center: after years of scientific research, we are taking a major step forward in the treatment of retinal problems in people with Usher syndrome.” www.radboudumc.nl/en/news-item... #ushersyndrome #genetherapy #keeplistening

Text in the image reads, “Save the Date: USH Connect 2026, Saturday 19 September.” Below this is a group photo from a previous USH Connect event, showing some of the attendees standing outside a building. Some people are using canes, and a guide dog is also visible. The Usher Syndrome Ireland logo appears at the bottom of the image.

Have Usher syndrome or know someone who does?

USH Connect 2026, Sat, 19th Sept is the only event in Ireland dedicated for this community playing an important role in fostering connection, shared learning, & peer support. Sign up to stay updated: tinyurl.com/SignUpToUSI 

#Speirgorm #UsherSyndrome

A photograph of a woman sitting at a table working on a laptop. Text overlay reads, “January Newsletter dropping tomorrow.” Additional text highlights what’s included: “Community Updates, Research News, USH Meetups, and Events.” The Usher Syndrome Ireland logo appears at the bottom of the image. 

Looking for updates, opportunities to connect, and the latest Usher syndrome news? Our January newsletter is landing tomorrow and is full of community updates, research highlights, and ways to get involved this year.

Not on our mailing list yet? Sign up here: tinyurl.com/SignUpToUSI

#UsherSyndrome

Promotional graphic for a January 15 episode of the Disability Daily Podcast featuring Robert Tarango. The poster includes the podcast logo and a dark gradient background, alongside a movie poster for Feeling Through showing two men sitting on a bench at night. Text identifies Tarango as a DeafBlind actor.

Today on the #Disability Daily #Podcast we celebrate #Deafblind actor Robert Tarango!

Listen and read transcript: tinyurl.com/DisabilityDaily

#accessibility #deaf #blind #LowVision #UsherSyndrome #FeelingThrough #deafblindness #deafness #blindness #Representation #RepresentationMatters

Image description: A circular portrait of Dr. Solomon Kamal-Uddin is centred on a blue and white background. He has short dark hair and is wearing a blue shirt. Text on the image reads, “Welcome to the Team, Dr. Solomon Kamal-Uddin, New Board Trustee.” The Usher Syndrome Ireland logo appears underneath.

🎉 We’re delighted to welcome Solomon as our newest Trustee (Director).

Solomon brings both professional + lived experience to our board. Alongside his clinical work in healthcare, he has experience in research, education, + working with patient organisations.

#UsherSyndrome #RareDisease

A four-panel image. Two panels show the same image from different angles of a laptop open on a table, with several people visible on the screen taking part in an online chat. One panel contains the text “USH Meetups”, and another reads “A new relaxed space to connect with others in Ireland • 29 Jan • 7:30pm • Online.” A QR code appears beneath the text.

USH Meetups - bringing our Usher syndrome community together, wherever you live in Ireland.

📅 Our first meetup is Thursday, 29th January at 7:30pm.

For more info and to receive your Zoom link: 040dd814.sibforms.com/serve/MUIFAD...

#UsherSyndrome

Hi again, I got my new Apple Pencil for my new iPad A16. That's cool and how to use? #Apple #blind #deafblind #ushersyndrome #glaucoma

🎄A Christmas message from the Usher Syndrome Ireland team to our community and supporters.

Thank you for being part of it, and we wish you a very happy Christmas. We look forward to an exciting 2026 ahead. ✨

#UsherSyndrome #ThankYou #SpeirGorm #Ireland

We need to find a cure for retinitis pigmentosa before my sons are completely blind. #RP #blindness #UsherSyndrome

What a fantastic and enjoyable fundraiser with the always entertaining Roof Rabbits! Aren’t they just brilliant? Thank you so much for your support.💚 With the help of a special raffle, an incredible €920 was raised for Usher Syndrome Ireland.

#Speirgorm #UsherSyndrome #Fundraiser #TogetherWeCan

Giving voice to the ‘quiet Cajuns’ A new documentary spotlights the endurance and adaptability of Cajuns with genetic deaf-blindness.

"Figures estimate that there are 200-1,000+ Cajun descendants with the 'Acadian' variance, which means they are born deaf and gradually lose their sight." thecurrentla.com/2025/giving-... #cajun #louisiana #ushersyndrome #keeplistening

AAVantgarde closes $141 million Series B for genetic disease therapies The company plans to use the Series B funding to progress clinical trials for two genetic eye disorders, Stargardt disease and Usher 1B syndrome.

AAVantgarde Bio has raised $141M in Series B funding to advance gene therapies for Stargardt disease and Usher 1B syndrome — two inherited retinal diseases.

#News #Biotech #GeneTherapy #Ophthalmology #RareDiseases #LifeSciences #Stargardt #UsherSyndrome #HealthInnovation

AAVantgarde closes $141 million Series B for genetic disease therapies The company plans to use the Series B funding to progress clinical trials for two genetic eye disorders, Stargardt disease and Usher 1B syndrome.

AAVantgarde Bio has raised $141M in Series B funding to advance gene therapies for Stargardt disease and Usher 1B syndrome — two inherited retinal diseases.

#News #Biotech #GeneTherapy #Ophthalmology #RareDiseases #LifeSciences #Stargardt #UsherSyndrome #HealthInnovation

A cute Jack Russell rests its paw on a laptop keyboard. The on-screen caption reads “Hey you,” and a QR code beside it links to a sign-up form.

Updates that matter - Connecting patients, researchers, and organisations in the Usher community. Sign up today: tinyurl.com/SignUpToUSI

#UsherSyndrome #RareDisease #HearingLoss #RetinitisPigmentosa #BlindnessAwareness #NonProfit #PatientAdvocacy #SpeirGorm #Ireland

A woman wearing a jumper is covering her eyes with her hands. There is a pair of hands also covering her ears. Caption in image reads, Invisible Disabilities Week.

This week is Invisible Disabilities Week, and we are asking you to share: What invisible challenges do you wish others could understand better? Let us know in the comments below.

#SeeTheInvisible #SeeUSH #UsherSyndrome #HearingLoss #RP #RetinitisPigmentosa #BlindnessAwarenessMonth #SpeirGorm

ID: A table with a display stand placed behind it. On the table are various items including boxes, paper bags, leaflets, and simulation glasses. The table is covered with a tablecloth that has several icons of eyes and ears with the caption 'Are you Usher Aware?' in a circle. The display stand contains similar images and text.

A big thank you to the Irish Society of Hearing Aid Audiologists (ISHAA) for inviting us to speak & have a stand at their recent conference. We’re pleased to see growing awareness & understanding of Usher syndrome within the audiology community! #UsherSyndrome #Audiology #Accessibility #Healthcare

My wonderful husband, Dr John Bladen, and I standing in front of a large banner saying Cure Usher Ball 2025

Thank you #CureUsher for hosting a wonderful charity ball to raise vital funds for #research and raising #awareness of #UsherSyndrome 💙

Usher Syndrome Coalition Building and connecting the global Usher syndrome community.

Have you heard of USH?
" #UsherSyndrome (USH) is a rare inherited condition - passing from parents to children - that impacts three major senses in the body: hearing, vision, and balance."
#RareDiseases 🩵🦓🩵
#raredisease #chronicillness #healthcare #genetics