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 […]
Stichting Ushersyndroom good cause Zandvoort Circuit Run
/in News /by Ivonne BressersThe 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 […]