International Symposium on Usher Syndrome

USH 2018 – July 19-21, 2018 in Mainz, Germany

Program USH2018 Patient Symposium (USH Connections Conference), Mainz 2018

Childcare will be provided on International Patient Symposium (Usher USH Connections Conference)

On International Patient Symposium (Usher USH Connections Conference) on Saturday, July 21, 2018 Sign language and speech to text interpretation (both in english and german) can be booked free of charges. For participants from german speaking countries a spech translation is available. If you need assistence services please contact until May 27 Deutsche Gesellschaft für Taubblindheit gGmbH at

Friday July 20, 2018

Rhine River Cruise (ticketed event)


Bus departure to Mainz to boat landing site


Boat tour Mainz - St. Goar and Dinner

23:30 Return to Mainz
Saturday, July 21, 2018, International Patient Symposium
(Usher USH Connections Conference)
09:00 Welcome Addresses N.N.
09:15 Introduction patient day: Irmgard Reichstein / Dominique Sturz / Mark Dunning / Sebastian Klaes
  Summary scientific part in layman´s terms (Chair: Irmgard Reichstein)
09:25 Margaret Kenna, Boston, United States: Diagnostic and genetics of Usher Syndrome
09:50 Uwe Wolfrum, Mainz, Germany: Cell and molecular biology of Usher Syndrome
10:15 Gwenaëlle Géléoc, Boston, United States: Summary of Scientific day: Therapy
10:40 Coffee break with scientists, poster, exhibition
  Oral presentations: "Therapy in Focus" (Chair: Margaret Kenna)
11:30 Isabelle Audo, Paris, France: Update USHStat Myo7 and other clinical trials
11:55 Thomas Lenarz,:Hanover, Germany: Cochlear implant technology
12:20 Eberhart Zrenner, Tübingen, Germany: Retina implant and electrostimulation
12:45 Darija Udovicic Mahmuljin, Perkins International: Steps Toward Better Life: Improving access and quality of education for DB and MD children and youth through partnerships - global campaign
13:00 Lunch with scientists, exhibition, posters

Parallel to lunch in the lecture hall:

14:00 Inclusion through InnovationModerator: Sebastian Klaes, Braunschweig, Germany, short oral presentations


Mariya Moosajee, UCL, Clinical trial design for nonsense mutations treatment of USH2A

Annamarie Dillon, Netherlands, ProRQ Clinical trial design for AON treatment of USH2A


Dorothea Kohlhaas, Argus II user, My experiences with Argus II and the better quality of life


Alfred Stett, Retina Implant AG: Title TBA

  Patient’s View, Diagnosis, Health, Psychological Aspects, Healthcare (Chair: Dominique Sturz)
15:00 Julia Moser, Vienna, Austria: Patients view to Usher Syndrome
15:25 Kimberley J Smith, Uxbridge, United Kingdom: Psychosocial well-being and health-related quality of life in a UK population with Usher Syndrome
15:50 Coffee break with scientists, poster, exhibition
16:30 Claas Möller, Örebro, Sweden: The urgency of interdisciplinary healthcare and support for people with Usher Syndrome
16:55 Podium discussion: patient, scientists, clinicians and professionals

Moderator: Mark Dunning

Laura Bingenheimer, Emma Boswell,  Brendan Creemer, Claes Möller, Uwe Wolfrum


End of the symposium – farewell


Family dinner (ticketed event)

Registration USH2018 Patient Symposium

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