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: SHOW EMAIL
- 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)
- Information and Support for British Asians with RP (public)
- 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:
- Retinitis Pigmentosa Support Group
- The British Retinitis Pigmentosa Peer Support Group
- RP Fighting Blindness (BRPS) Information and Support Group
- GuideDogs Coffee Lounge (closed)
- Retinitis Pigmentosa
- Retinitis Pigmentosa – Research and Treatments