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.
How?
Subscribe to the newsletter
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!
Join the USH Trust Registry, the largest international Usher syndrome registry in the world.
The Registry is available in English, German, Spanish, Dutch, Hebrew.
Source: https://www.noisyvision.org/2019/07/22/usher-syndrome-community/
