NIHR Moorfields BRC supports Usher Syndrome Information Day - NIHR Biomedical Research Centre: Moorfields

On Saturday the 21^st of March 2026, the NIHR Moorfields Biomedical Research Centre (BRC) supported a dedicated Usher Syndrome Information Day at the UCL Institute of Education.

Audience seated in a hall facing a stage with a large projector screen reading “Welcome, Professor Mariya Moosajee, Usher Syndrome Information Day.” A British Sign Language interpreter stands to the right signing, while Professor Mariya Moosajee and a colleague present in front of the stage .

The event, led by Mariya Moosajee, brought together over 200 attendees including patients, families, clinicians, researchers and charities, with the aim of sharing the latest clinical insights, research developments and support available for those affected by Usher syndrome.

Usher syndrome is a rare genetic condition and the most common cause of combined deafness and blindness. It affects both hearing and vision, often involving congenital or early-onset hearing loss alongside progressive vision loss due to retinitis pigmentosa. While there is currently no cure, ongoing research continues to improve understanding of the condition and offers hope for future treatments.

Audience seated in a hall facing a stage with a large projector screen reading “Usher Kids Patient Information Day – The Ear: Hearing and Balance.” Professor Mariya Moosajee and Dr Roohi Shrivastava are answering questions in front of the stage. One audience member has their hand raised. — Dr Roohi Shrivastava
Audiovestibular Medicine, Great Ormond Street Hospital

Sakina Rajabali stood behind a podium with a screen and keyboard and mouse, presenting her talk to an audience in a hall sat facing her. She is h — Sakina Rajabali
Genetic counsellor, Moorfields Eye Hospital

Dr Randa Li stands at the front of a hall behind a podium, holding a microphone. Behind her is a stage with a large projector screen with information on Usher Syndrome genetics. A large TV screen to the left is also displaying the same text. To the right a British Sign Language interpreter is signing the talk on a platform. — Dr Randa Li
Clinical Trials Research Fellow, Moorfields Eye Hospital

The morning session focused on building a clear understanding of the condition, with talks covering the ear, eye and genetic basis of Usher syndrome. Speakers included specialists from Moorfields Eye Hospital and Great Ormond Street Hospital who provided an overview of how the condition is diagnosed and managed.

Attendees also heard about the latest research developments, including:

pre-clinical research into retinal disease mechanisms
advances in hearing research
updates on current and upcoming clinical trials

These sessions highlighted the ongoing efforts to translate research into effective treatments.

Three NIHR Moorfields Biomedical Research Centre employees are stood together smiling at the camera. They are wearing matching navy blue branded t-shirts and have large yellow name badges on lanyards around their necks. Behind them is a charity stand for Cure Usher Syndrome.

The afternoon sessions focused on practical support and lived experience. Talks explored assistive technologies, social care support, and services available to individuals and families living with Usher syndrome.

Representatives from organisations including Deafblind UK, The Molly Watt Trust, Cure Usher Syndrome and Usher Kids UK shared their work and the support they provide to the community. This included speakers with lived experience who offered powerful personal insights into navigating education, work and daily life with Usher syndrome.

The day concluded with short presentations from researchers living with Usher syndrome, highlighting both their work and personal journeys, and offering an important perspective on representation within research.

Emma Boswell
DeafblindUK

Professor Mariya Moosajee, Mark Jordon, Chris Rowe and Sharon Rowe are at the front of a hall. Mariya is holding a microphone speaking to the audience while Mark is sat on the stage behind. Chris and Sharon are wearing matching Cure Usher branded black t-shirts and Chris holds Sharon’s cane. Behind them is a large projector screen that reads “Sharon Rowe, Chris Rowe and Mark Jordon. From Family Experience to Research Action, Cure Usher”. — Mark Jordon, Chris Rowe and Sharon Rowe
Cure Usher Syndrome

Penny Lockhart stands behind a podium holding a microphone and tablet. Penny Is wearing an Usher Kids UK branded yellow t-shirt. Behind Penny is a large projector screen reading “What does Usher Kids UK do?”, images of the charities work are displayed beneath this text. — Penny Lockhart
Usher Kids UK

The event was made possible through the support of partners including our generous sponsor, Sepul Bio, as well as Deafblind UK, Friends of Moorfields, Deafness Cognition and Language Research Centre (DCAL), Cure Usher Syndrome and the NIHR Moorfields Biomedical Research Centre.

The event was an important step in bringing together the Usher community, clinicians and researchers in one space to share knowledge, experiences and perspectives.

Thank you to everyone who attended, contributed to, and supported the day.

Further Reading