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 were hard to find and highly fragmented. The Usher Syndrome knowledge portal is made available by the Stichting Ushersyndroom and it will be officially launched by Dr. Ronald Pennings of the Radboudumc in Nijmegen, the Netherlands, with a festive touch.
Stichting Ushersyndroom (formerly Stichting MUS) was established in the year 2012 from a need to share experiences and information with each other. When being diagnosed for Usher Syndrome, you have the ‘sword of Damocles’ hanging above your head and you will have a lot of questions, such as: ‘How can I live my life knowing that my child will become both deaf and blind?’
Today, Stichting Ushersyndroom will launch a portal that has been developed for and by people suffering from Usher Syndrome in which they as Usher experts by experience have put together all their knowledge and information. If you want to help us further develop the knowledge portal, please contact us through kennisportaal@ushersyndroom.nl.
Festive touch
Ronald Pennings, MD, PhD, ENT consultant and Usher syndrome specialist of the Radboudumc in Nijmegen, will virtually open this portal with a festive touch.
Renewed campaign site
Simultaneously with the development of the knowledge portal, Stichting Ushersyndroom also gave the campaign site a new look. You can easily switch between the campaign site and the knowledge portal using the footer at the bottom of each page of the website.
Sharing knowledge and information is essential for unravelling Usher Syndrome. Usher Syndrome is a serious hereditary disorder that has a far-reaching impact on the lives of people suffering from Usher Syndrome and their social environments. We wish to eliminate this disorder from the bottom of our hearts. Therefore Stichting Ushersyndroom has formulated the following mission: ‘A treatment for Usher Syndrome in 2025!’
Support us and make our dream come true!
