Web Directory

» A-Z Deafblindness
   An in-depth article by Mary Guest, Head of Usher Services at Sense. Includes a detailed description of Usher syndrome, the symptoms, genetics, transmission, associated problems and what can be done.
   http://www.deafblind.com/usher.html

» Boys Town National Research hospital: Usher Syndrome
   Provides information on types 1, 2 and 3 of this condition, retinitis pigmentosa, hearing loss, balance, gene studies, and other conditions which may have similar symptoms.
   http://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

» Deafness Research UK: National Collaborative Usher Study
   Research project using 200 individuals with Usher syndrome and studying how their hearing, balance and vision are affected, and correlating this data with their genetic background.
   http://www.deafnessresearch.org.uk/National%20Collaborative%20Usher%20Study+2386.twl

» NIDCD: Usher Syndrome
   Factsheet on this condition that affects both hearing and vision, its causes, characteristics and treatment.
   http://www.nidcd.nih.gov/health/hearing/usher.asp

» NIDCD: Usher Syndrome: New Insights Lead to Earlier Treatment
   Article on this genetic disorder and how early screening may help minimize the social isolation often associated with being both deaf and blind.
   http://www.nidcd.nih.gov/health/hearing/usher_new.asp

» National Institutes of Health: Usher Syndrome
   Provides information including a description of the condition, resources, how to join a NIH clinical study, and funding opportunities for researchers studying the condition.
   http://www.ushersyndrome.nih.gov/

» Patient UK: Usher Syndrome
   Provides information on this genetic defect causing retinitis pigmentosa and congenital deafness and often vestibular dysfunction. Includes classification, presentation, differential diagnosis and management.
   http://www.patient.co.uk/showdoc/40001754

» Rare Disease Database: Usher Syndrome
   This database is maintained by the Swedish National Board of Health and Welfare and provides detailed information on this condition. In English and Swedish.
   http://www.socialstyrelsen.se/english/rarediseases/ushersyndrome

» Retinal Preservation Foundation of South Africa: Usher Syndrome
   A description of this disease.
   http://www.rpsa.org.za/a6.htm

» Sense: Usher Syndrome
   Describes the three types of this condition, how patients of each type are affected and what the future holds for them. Also provides information on the National Collaborative Usher Study.
   http://www.sense.org.uk/what_is_deafblindness/types_deafblindness/usher_syndrome/usher_syndrome.htm