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 […]
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 […]
Documentary Silence in the night
Would you rather be deaf or blind? Joyce de Ruiter (36) from the Netherlands can’t choose, she eventually will be deaf and blind because of Usher syndrome. Her path to […]
HURRAY! Everything you want to know about Usher Syndrome has now been put together!
Stichting Ushersyndroom launches the Usher Syndrome knowledge portal. Today, a long-cherished dream of many families confronted with Usher Syndrome will come true. So far, information and knowledge about Usher Syndrome […]
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 […]
International cooperation with Irish and UK patients.
Stichting Ushersyndroom have had close ties with Usher patients from Ireland and the UK for some years. Patients with Usher syndrome in Ireland and the UK have no central organisation specifically […]
The RUSH2a and the CRUSH studies
By now, both the RUSH2a and the CRUSH studies have been started in the Usher Syndrome Expertise Centre in Radboud UMC in Nijmegen, the Netherlands. What are the differences and […]
If you slowly become become deaf and blind
Slowly become both deaf and blind. It is hard to imagine. Still, this is reality for people suffering from Usher Syndrome. Usher Syndrome, actually what type of disorder is this? […]
CRUSH study and database for unraveling Usher Syndrome
Stichting Ushersyndroom will finance the start of the CRUSH study, a natural development study into Usher Syndrome. With this the basis can be laid for future trials. Patients can, with […]
Ivonne Bressers has appointed a knight of the Order of Oranje-Nassau.
/in News /by Ivonne BressersKing 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 […]