Support Systems

  • Australia
  • Usher kids Australia website: http://www.usherkidsaustralia.com/
  • Retina Australia WA website: http://www.rawa.com.au/
        • Deafblind Association S.A.: https://www.facebook.com/groups/351458244975497/
      • Deafblind West Australians (website coming soon; Facebook page): https://www.facebook.com/groups/364764059137/
    • Australian and NZ Deafblind Action (Facebook page): https://www.facebook.com/groups/209169762539050/
    • Deafblind NSW (Facebook page): https://www.facebook.com/groups/552380654892925/
  • Deafblind Association SA (Facebook page): https://www.facebook.com/groups/351458244975497/
  • Australians Deafblind Council ADBC: http://www.deafblind.org.au/
  • Deafblind Information website: http://www.deafblindinformation.org.au/
  • Deafblind Association NSW: http://www.dbansw.org.au/index.php
  • RIDBC Renwick Centre (for research and professional education): http://www.ridbc.org.au/renwick/index.php
  • Royal Institute for Deaf and Blind Children (RIDBC): http://www.ridbc.org.au/

 

  • Denmark
  • for children: Center for deafblindness and hearing loss: www.cdh.rn.dk
  • for grown-ups: Center for the deaf: www.cfd.dk
  • Deafblind organization: www.fddb.dk

 

Germany
Bundesarbeitsgemeinschaft der Taubblinden e.V.
Deutsches Taubblindenwerk gGmbH
Leben mit Usher-Syndrom e.V.
Taubblinden-Info

  • UK

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

 

The following groups are specific to retinitis pigmentosa, or sight loss, but often include references to Usher syndrome:

 

  • USA
  • US Families for Usher syndrome: http://www.usher-syndrome.org/
  • US Support Group/Foundation fighting Blindness: http://www.blindness.org/
  • National Organization for Rare Disorders: http://rarediseases.org/rare-diseases/usher-syndrome/
  • Texas school for the blind and visually impaired: http://www.tsbvi.edu/independent-living-skills/171-dbarticles/3267-information-about-usher-syndrome
  • National Consortium on Deaf-Blindness (USA): http://www.nationaldb.org/about.php
  • Usher Coalition: http://www.usher-syndrome.org/