Support Systems

  • Australia
  • Usher kids 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:


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

  • 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:


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


  • USA
  • US Families for Usher syndrome:
  • US Support Group/Foundation fighting Blindness:
  • National Organization for Rare Disorders:
  • Texas school for the blind and visually impaired:
  • National Consortium on Deaf-Blindness (USA):
  • Usher Coalition: