It is important to create an Usher Syndrome Community because we need to join efforts, resources and ideas and address them in one direction to have a stronger impact.
As a matter of fact there is not one Global Usher Syndrome Community. However since English is the most common language the Usher Syndrome Coalition is probably the main reference and in its community we can find a lot of Usher people from the United States, the United Kingdom and other countries.
Given the great work that the Coalition has done over the years we believe we should try to support this organization and join their community.
Join the USH BLUE BOOK
The USH Blue Book Online Forum is a private email group created to provide a way for individuals with Usher syndrome and/or their families to communicate with each other about topics related to Usher syndrome. The group’s posts are saved for future reference, creating a growing body of information from YOU – The Experts!
Joining a patient registry especially for those with Usher syndrome could provide benefits to both patients and researchers.
List of patient registry:
USH Trust Registry: The Usher Syndrome Coalition maintains the largest database of people with Usher syndrome worldwide, providing a bridge between researchers and the Usher syndrome community.
By registering in the USH Trust,you will become part of the largest global network of individuals with Usher syndrome. You will have the opportunity to contribute to the world’s understanding of Usher syndrome, will be ensured of receiving information on the latest research, treatments and clinical trials, and will be the first to learn about opportunities to participate in research.
Please consider registering. You are the key to fully understanding Usher syndrome and finding treatments and a cure.
MyRetinaTracker: “My Retina Tracker® is a free on-line registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases”.