Usher Syndrome Registry Now Online in Hebrew Too!
Posted on January 22, 20140 Comments 0 Likes Like this post
Deborah Toubi - Center for Deaf-Blind Persons, Beth David Institute
Elias Kabakov - Coalition for Usher Syndrome Research
As many of you know, Usher Syndrome is the leading cause of deaf-blindness in the United States and Europe, and individuals with Usher Syndrome can be found around the globe, but typically not in large concentrations in a given location. As a result, researchers often have difficulty locating a sufficient number of subjects to test new treatment regimes, and individuals and their loved ones have no one nearby for mutual support or even just to consult or share their experiences with. Now, thanks to The Coalition for Usher Syndrome Research (http://www.usher-syndrome.org/), there is a way to overcome these obstacles. They have opened the first ever International Registry for individuals with Usher Syndrome, which is an international database for both future research (individuals can register freely at https://www.usher-registry.org) and mutual support for individuals and their families (https://www.usher-registry.org/en/join_the_family_network)
The Coalition was founded by and for those with Usher Syndrome and their families, and the computer work to set up the registry was done by someone with Usher. In order to facilitate registration from other countries, the forms were translated, first into Spanish (https://www.usher-registry.org/?locale=es) and now, into Hebrew, which went online November 26th (https://www.usher-registry.org/?locale=he).
The Hebrew translation was done by the Beth David Institute - Center for Deaf-Blind Persons, which is based in Tel Aviv. The Center is the only organization in Israel which initiates, develops, and provides a wide range of innovative, comprehensive rehabilitation, educational, and social services for this population, fights for their rights, and enables these individuals to live full and independent lives as far as possible. Our programs serve deaf-blind Israelis of all religions and ethnic groups and enable them to understand and cope with their disability and to play an active role in their own rehabilitation and that of others. It was an honor for us to be invited to translate the Registry forms and we look forward to encouraging Israelis with Usher to register and join the international forum. This step will be of immediate benefit to those that register, in addition to the long term benefits offered by research.
The Coalition for Usher Syndrome Research: http://www.usher-syndrome.org/
Usher Syndrome Registry: https://www.usher-registry.org/
Center for Deaf-Blind Persons – Beth David Institute (Israel): http://www.cdb.org.il
The Coalition for Usher Syndrome Research will hold the Third International Symposium on Usher Syndrome in conjunction with the Sixth Annual Usher Syndrome Family Conference in Boston, Massachusetts, July 10-12.