Finding Support in the USH Community

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USH Connect: USH Connect is a new USH peer support programme from Usher Syndrome Ireland for those impacted by Usher syndrome, whether as an adult, parent, partner, or a family member, to connect with an USH Peer Supporter who has lived experiences to provide a listening ear to provide emotional and practical support. Eugene, is our parent USH peer supporter and he would be happy to provide a listening ear to other parents. You can reach out to him by emailing him at eugene.ushconnect@gmail.com

Family 2 Family Calls: 'Family 2 Family Calls' is a global support call via Zoom for families of children/teens with Usher syndrome. The calls are facilitated by a number of organisations including Usher Syndrome Ireland. Held once a month from September-May, discussions covers a range of topics such as education and wellbeing.  If you would like to join in on these calls, you can register here. 

Facebook Groups: The following are some Facebook groups you may wish to join and connect with other parents to, share your journey, asks questions, and receive information.

• Usher Ireland - This is a private group run by Usher Syndrome Ireland. 

• Usher Syndrome Parents 
• Usher Moms 
• Usher Kids UK Discussion and support forum 

Organisations: The following is a list of other organisations focusing on children and teens with Usher syndrome

• Usher Kids UK
• Ava's Voice
• Usher Kids Australia

Blogs: some parents choose to write about their experiences as a parent of a child with Usher syndrome. The following is a list of some

• Usher Mom lives in the Netherlands, and writes about her journey with her son Jackson and his Usher diagnosis.

We have also started a new blog, Life with Usher Syndrome, which aims to brings stories from the USH community, whether as a person who is living with this condition, or as a parent of child who has Usher syndrome.  We would love for you to contribute your story so please get in touch for more information. 

Social Media: searching #UsherSyndrome can bring up many results, especially from many families who have a child with Usher syndrome and are sharing their story to create awareness. 

Newsletter: We send out regular newsletter keeping our community updated and informed of any events that may be of benefit to them. 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.