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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
Nobel lecture CRISPR/Cas9
with a digital tour of the fish lab The Radboud PUC of Science has in cooperation with Radboudumc organised an on-line lecture about CRISPR/Cas9. This lecture was given on 10 December 2020, the […]
Worldwide research study for patients with USH 1c
If you have Usher Syndrome Type 1C, your participation is critical to developing treatments. History studies are an essential part of bringing treatments to patients. As researchers get closer to […]
Is a treatment for USH 1B in sight?
story of ophthalmologist Dr. Ingeborg van den Born A natural development study for people diagnosed for Usher Syndrome type 1B was started already some time ago. This study is conducted in preparation […]
The developments in the research laboratory
Despite the corona crisis, which has dominated our country for some time and as a result of which the research laboratory of Erwin van Wijk in the Radboud UMC for […]
ProQR announces first results from STELLAR
Summary of Phase 1/2 Interim Analysis of QR-421a for Usher Syndrome Program A first-in-human clinical trial of QR-421a is ongoing. The Phase 1/2 study, named Stellar, includes adults that experience […]
A tailor-made genetic patch for very rare mutations
New centre for RNA therapy set up for small patient groups. Scientists and physicians of the Leiden University Medical Centre (LUMC) and the Radboudumc together started the Dutch Center for […]
Development of gene therapy for large USH2C gene
Patient and researcher form a tandem in scientific research into Usher Syndrome Usher Syndrome patients and researchers of Radboudumc set the tandem in motion again for scientific research into a […]
Know your gene!
Usher Syndrome is a rare hereditary disease. In the Netherlands, about 1000 people suffer from Usher Syndrome, but far from everyone has been diagnosed. Now that the scientific developments are […]
Into daily life with an artificial organ of balance
A major subsidy, making available a treatment for patients suffering from imbalance problems in a shorter time The introduction of the artificial organ of balance has come one step nearer […]
Study of the natural Development for USH1B started
Research into the natural development of Usher Syndrome is essential in the phase of therapeutic scientific developments. Many and detailed eyesight and hearing measurements are to be recorded in 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 […]