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 […]
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 […]
‘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 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 […]
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, […]
Stichting UshersyndroomLooking 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 […]
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 […]
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 […]