The four key words of CUREUsher’s logo represents the charity’s core beliefs which could bring us closer to our goal of finding a treatment or cure for Usher syndrome. We strongly believe that more collaboration between researchers, organisations and patients is the key to achieving our goal. By bringing knowledge and participation together it could lead to a better understanding of Usher syndrome, how the disease works, and potentially lead to a treatment/cure.
We also believe that patient involvement brings empowerment to all those people living with Usher syndrome.
The purpose of our website is to create a resource where the latest information on Usher syndrome research, registries, and information can be accessed. By providing signposts to other like-minded organisations and groups, people can also become more involved in a worldwide Usher community, and make it even a bigger and more powerful one yet.
Our Mission Statement
‘To promote and protect the health of those suffering from genetically inherited Usher syndrome, through the provision of information for people affected by this condition, and by funding scientific research into the causes, treatment and cure of all types of the condition and publishing the useful results.'
What is Usher syndrome?
Usher syndrome is a complex rare genetic condition with many symptoms, but its major symptoms are, progressive sight loss combined with varying level of deafness.
It is estimated that there are approximately 400,000 people living with Usher syndrome worldwide, and it is the leading genetic cause of deafblindness.
There is currently no cure nor treatment to cure or halt any of the symptoms associated with Usher syndrome.
You can read our brief explainer, ‘What is Usher syndrome?’ to learn and understand more about Usher syndrome, it causes, the three types and characteristics, as well as its inheritance pattern by clicking below.
CUREUSHER CO-FINANCES ITS FIRST USHER SYNDROME RESEARCH STUDY
CUREUsher is very pleased to officially announce its co-financing of a new research study in a collaboration effort with Stichting Ushersyndroom, a foundation based in the Netherlands. Read more about this exciting news!
Your donation enables us to get one step closer to the cure for Usher syndrome by allowing us to keep raising awareness of Usher syndrome, pushing for increased collaboration, and to give grants to Usher syndrome research.
THE HEARING FUND UK 8TH GALA BENEFITTING CUREUSHER
The recent Hearing Fund UK annual gala featured a wonderful evening of entertainment with Merrill and Justin Osmond, and friends. CUREUsher was selected to benefit from the proceeds of this year’s event to support our work to fund research into Usher syndrome…