Usher Syndrome India (USH India)

Welcome to Usher Syndrome India

Usher Syndrome India (USH India) is the India Chapter of the Usher Syndrome Coalition. Founded in 2008, the Usher Syndrome Coalition is an international organization dedicated to connecting individuals with Usher syndrome to resources, to the research community, and to each other. USH India was formed in 2020 to cater to the specific needs of the Usher community in India.

Usher syndrome is the most common genetic cause of combined hearing loss and vision loss (a.k.a. deafblindness). Usher syndrome affects 3 senses -- hearing, vision and sometimes balance.

Learn more about Usher syndrome and how to manage it. You are NOT alone! Be part of a community that understands what you are going through. 

This blog aims to be the central source of information for everything related to Usher syndrome in India. Help us make this blog more useful, complete and accessible, by sending us feedback via email, or leaving a comment below.

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!
• Join USH India WhatsApp Group (contact us to be added)
• Join USH India Facebook Group

• Global Resources:
• 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. 

• Find resources for parents of children with Usher syndrome.

• Check out our resources Just for Young Adults.

• 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: 

• Educational Considerations for Students with Usher Syndrome  

• Stay up to date with the latest info about Usher syndrome research, organized by subtype

• Check announcements and updates on Facebook and Twitter @UsherCoalition

• Subscribe to our YouTube Channel where you will find information about Usher syndrome in ASL

 

• India-Specific Resources: 
• Meet the USH India Ambassadors
• FAQs on Usher Syndrome
• Directory of Service Providers for the Deafblind in India
• Directory of Products for the Deafblind in India
• Early Intervention and Education (children)
• Living with Usher Syndrome (adults)
• Publications, Research Papers and News Articles
• Disability Laws, Rights and Benefits
• Advocacy
• Accessibility Guidelines
• Inspirational Stories
• Events and Conferences

Get Involved

Join us in making a difference in the lives of those with Usher syndrome in India:

• Become an USH India Member: Join our Facebook group or WhatsApp group to receive updates, participate in discussions, and access exclusive member benefits. Membership is free!

• Volunteer: Contribute your time and skills to support our initiatives and activities. Here are some ways that you can help the Usher community:
• Contribute to and/or help maintain our USH India webpages. Suggest information to add, such as inspirational stories, informative videos, etc.
• Share your knowledge and experience during our monthly calls
• Translate a flyer and other materials from English to Hindi and other Indian languages
• Sponsor a stall in your society or school events where our deafblind members can sell their self-made products
• Be a mentor for kids and young adults who have Usher syndrome
• Any help is welcome!

• Pay Forward: If you feel that our services have helped you in your Usher journey, we request that you "pay forward" by helping others with Usher in your own way. Together, we are stronger!

Contact Us

Reach out to us with your questions, feedback, or inquiries. We are here to assist you. 

Email: info.india@usher-syndrome.org