Australia
- UsherKids Australia website
- Retina Australia WA website
- Deafblind Association S.A.
- Deafblind West Australians (website coming soon; Facebook page)
- Australian and NZ Deafblind Action (Facebook page)
- Deafblind NSW (Facebook page)
- Deafblind Association SA (Facebook page)
- Australians Deafblind Council ADBC
- Deafblind Information website
- Deafblind Association NSW
- RIDBC Renwick Centre (for research and professional education)
- Royal Institute for Deaf and Blind Children (RIDBC)
Denmark
- For children: Center for deafblindness and hearing loss
- For grown-ups: Center for the deaf
- Deafblind organization
Germany
Bundesarbeitsgemeinschaft der Taubblinden e.V.
Deutsches Taubblindenwerk gGmbH
Leben mit Usher-Syndrom e.V.
Taubblinden-Info
U.K.
Please join our Usher Service public group.
There are a number of Facebook groups and pages for people with Usher, and their families.
Listed here are some of the longer established groups relevant to Usher syndrome/RP as of December 2015. If you find other useful groups please email: usher@sense.org.uk
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UsherVibe (private Facebook group)
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Usher & Deafblind Accessibility UsherVibe group, covering assistive technology and more.
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Usher Social (private Facebook group)
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Molly Watt and Friends Living with Usher syndrome (closed Facebook group)
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US FAMILIES (for Usher Syndrome) (public)
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Usher Syndrome Coalition (charity page)
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International Usher Syndrome Network (closed Facebook group)
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Usher Friends UK (closed Facebook group)
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Usher Support Networking – Usher/Deafblind only (private Facebook group)
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Johnboy’s deafblind awareness (private Facebook group)
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Usher Moms (private Facebook group)
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Proud Moms of Children with Usher Syndrome (private Facebook group)
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Usher Me In (community)
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NoisyVision – Usher Syndrome – Through the limits and beyond(community page)
The following groups are specific to retinitis pigmentosa, or sight loss, but often include references to Usher syndrome: