Finding Support in the USH Community
Find out where to connect with other USH families in a supportive USH community
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.
Organisations: The following is a list of other organisations focusing on children and teens with Usher syndrome
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.
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