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 […]

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 […]

Moon-Rocket Grant

Usher Syndrome Foundation Grant Call: The Moon-Rocket Grant The use of the word ‘Ushers’ for people with Usher syndrome is meant with a wink and refers to the meaning of […]

1 million euro

What has Stichting Ushersyndroom [Dutch Usher syndrome Foundation] done with it? We provide an overview and a glimpse into the future. Mini genes USH2A In the ‘mini genes’ project, the […]

What would you do with one million euros?

By Nico de Milliano, Chairman of the Advisory Board of Stichting Ushersyndroom [Dutch Usher syndrome Foundation] Stichting Ushersyndroom will soon reach a wonderful milestone: the first million will be brought […]

New research: testing gene therapy

With extra large vectors on mini retinas  Stichting Ushersyndroom [ Dutch Usher Syndrome Foundation] is funding the majority of the new research “Genetic drugs preventing blindness due to loss of […]

Minigenes USH2A: General status

By Erwin van Wijk, lead researcher Radboudumc Errors in the code of the USH2A gene explain the development of Usher syndrome in about 50% of all patients. In addition to […]

Stichting Ushersyndroom good cause Zandvoort Circuit Run

The popular Zandvoort Circuit Run will be held again on Sunday 27 March 2022. As a runner you must have run this unique race once in your life. The Zandvoort […]

Two generations on the big screen

Living with Usher and at the same time wanting to be a role model for others On the International Usher Awareness Day 2021, the documentary Stilte in de Nacht [Silence in the […]

Colour me blind – Usher Awareness Day 2021

Singer-songwriter Jasper Steverlinck sings about Usher syndrome Flemish singer-songwriter Jasper Steverlinck released a song in 2018 that he wrote in response to a friend’s personal story. Her son had been […]

Swim at night and take a nap during the day

Zebrafishes suffering from USH2A have a disturbed sleep rhythm Are patients suffering from Usher Syndrome so tired because of the huge efforts made in connection with their poor hearing and […]

Stichting Ushersyndroom [Dutch Usher Syndrome Foundation] Awards Grant to Usher III Initiative to Support Patient Database

A global Usher III patient (USH3) database for future clinical trials This year, the North-American foundation Usher III Initiative has taken preliminary steps towards collecting the information necessary to establish […]

Jack Weeda, draagt een bril en witte doktersjas

A view on the RUSH2a study

In the international RUSH2a study of Jacque Duncan MD, University of California, San Francisco, 120 patients spread over nine different clinics are monitored for four years. This study includes only […]

How are things going with the ‘minigenes USH2c’ study?

By now, the USH2c minigenes study was started almost a year ago. A four-year study which was made possible by co-financing of the Stichting Ushersyndroom, CUREUsher and LSBS. Thanks to […]

Positive results of QR-421a Phase 1/2 Clinical Trial for Usher Syndrome and non-syndromic Retinitis Pigmentosa

  ProQR has published positive results from its Phase 1/2 Stellar trial of QR-421a, an investigational RNA therapy for the treatment of Usher syndrome and retinitis pigmentosa (RP) due to […]

Report CRUSH study

CRUSH: The natural history study An interim report The CRUSH study is a study done at the Radboud UMC into the natural development of progression with Usher Syndrome type 2a […]