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

 

  Friday July 20, 2018
 

Rhine River Cruise (ticketed event)

18:15

Bus departure to Mainz to boat landing site

19:00

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

  Malu Dreyer, Prime minister of Rhineland-Palatinate
  Mark Dunning, Usher Syndrome Coalition: The Power of an Usher Syndrome Community
09:15

Introduction patient day

09:25

Summary scientific part in layman´s terms

  Margaret Kenna, Boston, United States: Diagnostic and genetics
  Uwe Wolfrum, Mainz, Germany: Cell and molecular biology of Usher Syndrome
10:25

Coffee break with scientists, exhibition

11:10

Oral presentations: "Therapy in Focus"

  Gwenaëlle Géléoc, Boston, United States: Summary of Scientific day: Therapy
  Isabelle Audo, Paris, France: Update USHStat Myo7 and other clinical trials
  Thomas Lenarz,:Hannover, Germany: Cochlear implant technology
  Eberhart Zrenner, Tübingen, Germany: Retina implant and electrostimulation
13:00

Inclusion through Innovation (3 presentations of innovative products) // Exhibition // Lunch with scientists (3 parallel activities offered)

13:30

Lunch with scientists – exhibition (2 parallel activities offered)

14:00

Inclusion through Innovation (3 presentations of innovative products) // exhibition // Lunch with scientists (3 parallel activities offered)

14:30

Patient’s View, Diagnosis, Health, Psychological Aspects, Healthcare

  Julia Moser, Vienna, Austria: Patients view to Usher Syndrome
  Kimberley J Smith, Uxbridge, United Kingdom: Psychosocial well-being and health-related
                          quality of life in a UK population with Usher Syndrome
  Claas Möller, Örebro, Sweden: The urgency of interdisciplinary healthcare and
                          support for people with Usher Syndrome
16:00

Coffee break, exhibition

16:30

Podium discussion

17:30

End of the symposium – farewell

19:30

Family dinner (ticketed event)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Registration USH2018 Patient Symposium

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