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 going really fast, the Stichting Ushersyndroom calls on everyone to have their DNA tested and to register with the National Usher Syndrome Expert Centre of Radboudumc in Nijmegen, the Netherlands.
The dream of all people who are confronted with Usher Syndrome in their daily lives is that researchers will in time find a treatment to stop the deterioration of eyesight and hearing.
Our dream can come true when all patients with Usher Syndrome know their gene and mutation.
In connection with the new privacy law people suffering from Usher Syndrome are hard to reach and patient files are no longer passed on to other specialists and hospitals.
By taking action yourself and to register yourself in the international CRUSH database of the national Usher Syndrome Expert Centre you contribute to sooner finding a treatment.
Start setting up your own patient file!
Ask your therapists for your medical data, such as audiograms, eyesight measurements, visual field tests, genetic and other results, and keep these at home in a file.
As soon as a study is started, you will be asked to participate. Then it will be convenient to already have your own patient file at hand. Specialists can see whether you meet the criteria of any study based on your own file. You can now register for the CRUSH database, so your contact data will be known already.
Do you want to know how you can ask for a DNA test? Please go to the knowledge portal for further reading.