Retina International Usher Disease Special Interest Group – RI-USH

At the request of members who represent the Usher community, Retina International has established the Retina International Usher Network – RI USH. This is a network of patient experts in Usher Syndrome who are affiliated to our national membership organistions. The network will act as a platform to support advocacy campaigns for the Usher community and to address the demand for up-to-date and reliable information on clinical trials and emerging therapies to all individuals with Usher syndrome, their families and associated medical professionals.

 

In a first step, the network is seeking volunteer patient experts who are ready to take an active part in the network and to form a committee, which discusses and implements the strategy. For this purpose, the committee candidates will meet in monthly conference calls hosted by RI.

 

If you or a member of your organisation may be interested in participating in this committee or you would like to learn more about the network, please email ushers@retina-international.org

 

You can meet our RI-USH Team here.

 

You can find out more about Usher Syndrome, such as symptoms, causes and potential treatments, in the ‘Focus On Usher Syndrome’ in RI’s IRD Toolkit by clicking here.

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