- 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)
- For children: Center for deafblindness and hearing loss
- For grown-ups: Center for the deaf
- Deafblind organization
Bundesarbeitsgemeinschaft der Taubblinden e.V.
Deutsches Taubblindenwerk gGmbH
Leben mit Usher-Syndrom e.V.
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: email@example.com
UsherVibe (private Facebook group)
Usher & Deafblind Accessibility UsherVibe group, covering assistive technology and more.
Usher Social (private Facebook group)
Molly Watt and Friends Living with Usher syndrome (closed Facebook group)
US FAMILIES (for Usher Syndrome) (public)
Usher Syndrome Coalition (charity page)
International Usher Syndrome Network (closed Facebook group)
Usher Friends UK (closed Facebook group)
Usher Support Networking – Usher/Deafblind only (private Facebook group)
Johnboy’s deafblind awareness (private Facebook group)
Usher Moms (private Facebook group)
Proud Moms of Children with Usher Syndrome (private Facebook group)
Usher Me In (community)
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: