Tears may hold the key to diagnosis and treatment

PILOT STUDY ON BIOMARKERS IN TEARS AND CELLS SHEDS NEW LIGHT ON USHER SYNDROME TYPE 1B Can tears provide critical information for improving diagnostics and monitoring future treatments for USH1B […]

A decade of impact at Stichting Ushersyndroom

On January 9, 2025, Ivonne Bressers (59) officially stepped down as chairperson of Stichting Ushersyndroom. During her search for appropriate care, she discovered how limited and inaccessible the available information […]

Message from the Supervisory Board

Resignation of Ivonne Bressers as of January 9, 2025, and appointment of Johan Driessen as Interim Chair On January 9, 2025, Ivonne Bressers stepped down from her role as Chair […]

Stichting Ushersyndroom supports research on personalized treatments

RNA Therapy for Ultra-rare mutations Stichting Ushersyndroom (Dutch Usher Syndrome Foundation) is supporting a new research project led by Prof. Dr. Rob Collin from Radboud University Medical Center (Radboudumc). This […]

Sepul Bio (Théa) Launches Phase 2b Clinical Trial of Ultevursen

FIRST PATIENT WITH USH2A-ASSOCIATED RETINITIS PIGMENTOSA TREATED    Sepul Bio has announced that the first participant has been dosed in the LUNA study, a Phase 2b clinical trial investigating ultevursen […]

Are rabbit eyes and cell models suitable?

Assessment of safety and toxicity of genetic patches Inherited retinal diseases, such as Usher syndrome (deafblindness), are rare conditions that result in a gradual loss of vision. These diseases have […]

Stichting Ushersyndroom launches the ‘Usher Crusher Grant’

We invite international scientists to seize this unique opportunity and submit their most innovative research proposals. On October 8th, Stichting Ushersyndroom [Dutch Usher syndrome Foundation] officially opens its second international […]

Aavantgarde logo

First patient treated in clinical study for gene therapy for Usher syndrome type 1B

On September 16, 2024, AAVantgarde Bio, a biotechnology company from Italy, announced that the first patient has been treated in a clinical study investigating the safety and efficacy of a […]

 Long-term outcomes of cochlear implantation in Usher syndrome

New insights from research Recent research by Mirthe Fehrmann and colleagues at Radboudumc has provided significant new insights into the long-term outcomes of cochlear implantation (CI) in people with Usher […]

An important next step in USH2c research

  Erwin van Wijk (Radboudumc) has recently received a substantial grant from the Foundation Fighting Blindness USA to create a large animal model in collaboration with the research groups of […]

#USH2025: International Symposium on Usher Syndrome 

After a long breadue to the COVID-19 pandemic since the 2018 Usher Conference in Mainz, we are excited to announce that the 5th International Symposium on Usher Syndrome, USH2025, will […]

‘Our Carin’ in Times Square

On May 16th, it was Global Accessibility Awareness Day. Microsoft paid extensive attention to this by organizing an event at the Rijksmuseum in Amsterdam where they launched and explained their […]

What are the best biomarkers and endpoints for future trials?

NEW RESEARCH THANKS TO THE ‘USHER ACTIE RIJNSBURG’ FRIENDS GROUP Usher syndrome, characterized by sensorineural hearing loss and progressive Retinitis Pigmentosa (RP), presents a significant challenge for the medical community. […]

A glimpse into the world of Prof. Camiel Boon, ophthalmologist

“The eye is such a beautiful and marvelously small organ, a highly specialized instrument with which we can perceive our environment in all its beauty and complexity.” Unfortunately, a lot […]

The Lifelong Vision Project

CONSORTIUM RECEIVES 22 MILLION EUROS In an ambitious attempt to combat blindness, a consortium of leading researchers led by Prof. Caroline Klaver from Radboudumc has launched the mission “Lifelong Vision.” […]

Patient and researcher: a dynamic duo once again cycling together

BUT NOW ON A RACING TANDEM WITH GEARS In a remarkable collaboration between patients with Usher syndrome and researchers from Radboudumc, a crucial next step is made possible in the […]

HOPE FOR USH1B PATIENTS

CLINICAL TRIAL BY AAVANTGARDE TO COMMENCE AAVantgarde, an international biotechnology company based in Italy and co-founded by Professor Alberto Auricchio, is dedicated to overcoming the limitations of adeno-associated virus (AAV) […]

jCyte stamceltherapie

jCyte Initiates Phase 3 Clinical Trial for RP Cell Therapy

Biotechnology company jCyte is gearing up to launch a phase 3 clinical trial in the United States for its jCell therapy, following a successful phase 2B trial and with approval […]

Ontwikkeling van een ‘netvlies-op-een-chip’ platform

Foundation supports innovative research into retinal diseases

Development of a ‘retina-on-a-chip’ platform  An important new study has been launched to offer hope to people suffering from hereditary eye diseases such as retinitis pigmentosa, Usher syndrome, macular degeneration, […]

Resumption of the clinical trial for RNA therapy for USH2a has been terminated

UPDATE September 27, 2023 In mid-August, we reported that ProQR Therapeutics, which had previously been forced to halt its two promising clinical trials, had found a new partner in Laboratoires […]

Who cleans up ‘the mess’ from the cones?

New research on the cause of blindness due to Usher syndrome A research team led by Dr. Ronald Roepman (www.roepmanlab.com) is conducting research at Radboudumc, Netherlands, to investigate the underlying […]

The very first adgrv1-zebrafish model has been presented!

Recently, an article was published in the journal Cells about the scientific research on USH2C. Merel Stemerdink and her colleagues at the Radboudumc have developed a zebrafish model with a […]

Two sides to the story

When your world turns dark Joyce de Ruiter was sixteen years old when her parents had to tell her that she’d been diagnosed with Usher syndrome: an inherited dis- order […]

Sleep problems Usher patient appears to be a hallmark feature of the disease

Vision impairment is not the driver of fatigue and sleep problems It was always thought that fatigue and sleep problems in patients with Usher syndrome are the result of increased […]

Does this mutation cause blindness? It does, doesn’t, does!

Janine Reurink ends long lasted controversy with major implications for healthcare Initially there was no doubt a specific mutation in the USH2A gene caused the eye disease retinitis pigmentosa. Spanish […]

Two groundbreaking projects awarded

‘Moon Rocket Grant’ awarded to two groundbreaking projects At this moment, there is no treatment yet for Usher Syndrome, a disorder that globally 400.000 people suffer from. In order to […]

Study into the best approach of USH1B

Stichting Ushersyndroom (Dutch Usher Syndrome Foundation) announces with pride its financing of a study that will test the best approach for USH1B (gene) therapy by making use of, among others, […]

Looking back at 2022

One year ago the Usher Syndrome Foundation announced its reaching the milestone of 1 million euro of donations. A huge and almost magical amount of money! Thanks to the many […]

Tears as a source of information?

Stichting Ushersyndroom and Usher Syndrome Ireland finance research into USH1b Can tears provide information that may be important for improving diagnostics and monitoring in future treatments of USH1b patients? In […]

Research “Development of exon excision therapy”

This study aims at permanently removing specific exons, which include hereditary mutations when patients are concerned, from the DNA of the photoreceptors in the retina and/or the hair cells of […]

Ivonne Bressers has appointed a knight of the Order of Oranje-Nassau.

King Willem-Alexander has appointed Ivonne Bressers (57) a knight of the Order of Oranje-Nassau. As president of the Dutch Usher syndrome Foundation and the driving force behind it, she is […]

New type of Usher Syndrome discovered: USH IV   

The team of the Hearing & Genes Expert Centre of Radboudumc lately made a discovery: Usher Syndrome includes four different clinical types. The researchers, with Hedwig Velde as principal author, recently […]

Run4Usher Zandvoort breaks all records!

On the 27th of March, the Run4Usher team joined almost 12.000 other runners at the start of the Zandvoort Circuit Run. This beautiful spring day set the scene for one […]