Usher Syndrome India (USH India): Resources

Our Services and Resources

We offer a range of services and resources to assist individuals with Usher syndrome in India.

Support Groups in India: Join our supportive community where you can connect with others, share experiences, and find encouragement. Membership is free!

We maintain the USH Trust registry of individuals of all ages with Usher Syndrome worldwide. If you have Usher syndrome, we encourage you to register for FREE. At a minimum, we simply ask for a name, type of Usher (even if it is not confirmed by genetic testing), and a means of contacting you. By registering, 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. For clinical trials, if we have a lot of registrants from India, we might be able to convince the researchers to set up a testing site in India.

The USH Blue Book Online Forum is a private email group for the Usher community to share information and support via email. There have been many lively discussions about parenting issues, coping strategies, cochlear implants, technology, research, and more.

The Annual USH Connections Conferences provide an opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of individuals living with Usher syndrome worldwide, their families, and professionals serving the deafblind community. USH2023, the 15th conference, will be on July 19-20, 2024. People can attend in-person in New York, or online from anywhere in the world.

If you’re interested in participating in research, the Usher Syndrome Data Collection Program (DCP) complements the USH Trust. The DCP captures detailed health and medical data, connecting the USH community with global research efforts, clinical trials, and treatments.

USH blog features a variety of writers who share their personal stories about living with Usher syndrome.

USH Talks is a growing series of pre-recorded presentations by international experts in Usher syndrome. They include information on a variety of Usher-specific topics including genetics, gene therapy, and services for children who have Usher. If you have ideas for topics you'd like to learn about, email the Coalition at info@usher-syndrome.org.

Webinars: The Coalition participated in a webinar on accommodations for students with Usher syndrome. You may access the archived presentations at the following links: