lighthouse [Homepage)European Usher Website


Overview     Sommaire   Überblick

on medical, research and rehabilitation aspects of the Usher Syndrome:

  1. Medical information on the Usher Syndrome
    1. Definition
      *What is Usher Syndrome ?
      *Usher Syndrome
    2. Pattern of Inheritance
      *What causes Usher syndrome?
    3. The Hearing Impairment
      *Looking for Signs
    4. The Visual Impairment
      *Vision Assessment in a Classroom Environment
      *How is Usher syndrome diagnosed?
      *How is Usher syndrome treated?
    5. Epidemiology
      *Etiology and Incidence/Prevalence


  2. Impact on personal life
    1. Personal experience / coping stories
      *My Life with Usher Syndrome
      *Famous People with Hearing Loss
      *J. Gallagher: The Way Forward For Us All
      *My Own Personal Hero

    2. How will my family be affected?
      *Usher Syndrome and the Family

  3. Help is available
    1. Visual aids
      * Visually Impaired Equipment and Software Suppliers
      *Tiresias
    2. Hearing aids
      *A Guide to Today's Hearing Instruments
      *Cochlear Implant
      *Nottingham Paediatric Cochlear Implant Programme
      *The Consumer Handbook on Hearing Loss and Hearing Aids.
    3. Legal aspects
    4. Vocational aspects
      *Consider Hiring A Skilled And Highly Motivated Employee...Who is Deaf-Blind
    5. Social and Psychological aspects
      *Common Experiences of People with Usher Syndrome
    6. Rehabilatation measures
      *Orientation and Mobility
      *How can we improve communication with people who have Usher syndrome?


  4. Research on Usher Syndrome
    1. Clinical research
      *What research is being conducted on Usher syndrome?
      *Clinical and Molecular Studies
    2. Genetics
      *The visual cascade
    3. Studies on fatty acids
      *DHA
      *Low Fatty Acid Levels In Sperm May Be Marker For RP


  5. Addresses and activities of patient organisations in Europe
    *Addresses of the EUSN group
    *Retina International
    *Deafblind UK


  6. Institutions of rehabilitation and professional counselling
    *Sense, The National Deafblind and Rubella Association


  7. Conferences, seminars, meetings, fundraising events
    *Euro-Tandem-Tour - Tour d’Europe en Tandem, Berlin - London, Monday, 03-06 to Friday, 14-06-2002

    *EUSN: Update you on the CAUSE CHARGE / Usher conference and what has been going on here

    *EUSN Pre-Conference – “Living with Usher Syndrome”: 21 – 23 July 2001

    *Vision Quest 2000 - Toronto Canada: July 14-16

    *I Congreso Nacional de Usher, Valencia Octubre 2000


  8. Discussion lists and chat rooms for Usher patients and professionals
    *usher-list: The Usher Syndrome Mailing List
    *Retinitis Pigmentosa Mailing Lists


  9. Link collection
    *BiOptic Driving Network
    *EU Secretariat 2001 of the Swedish disability movement
    *Retina International
    *Usher Forum Page


  10. Literature, journals, newsletters
    *References
    *Usher Bibliography - Medical
    *Usher around the World
    *Links
    *Information resources
    * Retinal Degeneration Bibliography


  11. Rare Diseases
    *Rare Diseases Links
    *Examples of rare retinal degenerative diseases
    *Patients' Opinion on the European Regulation on Orphan Medicinal Products


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last update: 2002-05-14