The secret of the guide dog
THE SECRET OF THE GUIDE DOG Sofie loves Bo. Her father’s guide dog is the sweetest dog of the whole world. But then daddy starts going to work by cab […]
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Beyond the Muted Darkness
BEYOND THE MUTED DARKNESS The photo book ‘Beyond the muted darkness’ was launched in Pakhuis de Zwijger on 31 August 2017. This book contains photographs of forty people suffering from Usher Syndrome […]
The blind leading the blind
THE BLIND LEADING THE BLIND “A hilarious boost for the spirit for everyone in a time of crisis“ This is a story about Niek and Joyce. Niek has a spinal […]
Not hear, Not see, do speak
NOT HEAR, NOT SEE, DO SPEAK If your world becomes dark and quiet, will you be quiet as well? When Joyce was seventeen years old, a physician told her that […]
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 […]