A community of people with similar experiences can be a powerful support for our mental health. Because Usher syndrome is a rare condition, many are told that they "will never find another person with Usher syndrome." Although that may have been the case decades ago, technology, social media, and remote meeting platforms have changed that. In addition, connections can be made in person at conferences and USH Local Socials. Here are a few places to start to find others in the Usher community. 

  • Offers self-care courses online for individuals living with Usher syndrome/RP. Classes are led by Deb Marinos, MS CRC LPC (Oregon) CMBM Certified Mind-Body Skills Group Facilitator. Deb is legally blind from retinitis pigmentosa and has provided informative and engaging training for the past 20 years to electricians, people with disabilities & healthcare providers. Her experiences in a nontraditional career path allow her to be more open & sensitive to others' needs for inclusion, regardless of their uniqueness.

  • We’re a group of moms! We love our kids, our families, and our lives! We also have Usher syndrome, the leading genetic cause of deafness and blindness. Having progressive disabilities can be challenging at times and that is why we need to support each other! This is a safe space to be real, and share stories and resources! We are kind, pleasant, and respectful in our responses, no judgment!”

  • California's Usher syndrome community helps to unite individuals, families, and allies who are affected by Usher syndrome in California. Our hope is to build resource lists, network with individuals throughout California, and build a stronger community.

  • This group was formed to give Canadian individuals and families affected by Usher syndrome the opportunity to connect and share available resources across the country.

  • For those who have Usher syndrome, who are parents of children with Usher syndrome, and/or professionals who work with people with Usher syndrome in Florida. This is a place to support each other & network; share resources, news/updates & research on Usher syndrome; and to spread awareness. Please feel free to invite others who have Usher syndrome & live in Florida. Know that you are not alone!

  • Created to bring awareness to Usher syndrome, advocate for the unique needs of the Usher community in India, and share information and resources with families and individuals living with Usher syndrome in India. Our message to you is that ‘You are not alone!’

  • Este grupo es para personas con síndrome de Usher en México ¡pero las personas de todos los países de habla hispana son bienvenidas!

  • Discord is a voice, video, and text chat app used by tens of millions of people to talk and hang out with their communities and friends. Within Discord, there is a private Usher Syndrome Coalition community server. This is a safe place for the global community to connect with each other.

  • This group is to connect Tennesseans living with Deaf/Blindness, Hearing, and Vision impairments. This is meant to be a safe space to share experiences, and gain insight and support from each other!

  • Connect to the Usher community worldwide through this private Google Forum, an email-based list of more than 700 people with Usher (age 18 and older) and their families. The group's posts are saved for future reference, creating a growing body of information from YOU - The Experts!

  • Finding community is one way to support individuals. Our partner organization, Ava's Voice, hosts a one-week camp for youth with Usher syndrome. For more information, go to: www.avasvoice.org

  • This FB group was created for high school students, college students, and young adults, ages 17- 30, who are living with Usher syndrome. Members may participate in monthly virtual support group calls. Focuses on self-advocacy, college, career, and living a full life. It is a place for everyone to talk about their experiences with Usher and ask questions of people with similar ones.

Disclaimer: The information and resources on this website are provided for educational and informational purposes only and do not provide medical or treatment advice. You understand that such information is not intended nor otherwise implied to be medical advice or a substitute for medical advice, diagnosis, or treatment. The information should not be a substitute nor replacement for advice from a mental health or medical professional. You agree not to use any information found on our website to diagnose or treat a mental health, psychiatric illness, or medical disorder. Do not ignore advice from a mental health or medical professional because of the information you read on our website or the Internet.


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