Documentary Silence 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 […]

The small world of Machteld Cossee

Lisa Blom and documentary maker Hetty Nietsch followed the life of Machteld Cossee for six years. They stayed at the home of Machteld and her family and so recorded intimate […]

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 […]

Patient and physician jointly take the first step towards treatment of deafblindness

Stichting Ushersyndroom finances CRUSH study The expertise centre for Usher Syndrome in Radboudumc in Nijmegen (the Netherlands) will start a natural development study into Usher Syndrome. This is a very […]

Stichting Ushersyndroom finances restart of ‘minigenes’

Stichting Ushersyndroom makes available an amount of €35,000 to Radboud UMC for the restart of the ‘minigenes’ study in connection with Usher Syndrome. This involves the study which gives hope to […]