Finding Support in the USH Community

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Connecting with others on the same journey as you can help ease the loneliness that can come with having a rare condition that other people around you may not understand. The following are some ways to find others to connect with:

Facebook Support Groups: 

• Usher Ireland: We run a 'closed' Facebook support group which only allows those who have Usher syndrome or their family to join. Here you can ask any questions/concerns you may have, and get to know others living in Ireland with this condition too. 
• UsherVibe (UK support group)
• Usher Syndrome (of America) Support Group 

Social Media: searching #UsherSyndrome can bring up many results, especially from individuals who are living with Usher syndrome, and are sharing their story to create awareness. Instagram, and Tik Tok are especially popular apps for many to share their journey.

Blogs: We have started a new blog, Life with Usher Syndrome, which aims to brings stories from our writers. If you wish to share your story, please get in touch. 

Newsletter: We send out regular newsletter keeping our community updated and informed of any events that may be of interest to attend and meet with others. If you wish to subscribe to receive these, please click here.   

Contact us: If you have any questions or would like to connect with us, you can find our contact information here.