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. 

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

N.N.
Mark Dunning, Usher Syndrome Coalition: The Power of an Usher Syndrome Community
09:15

Introduction patient day Irmgard Reichstein, Deutsche Gesellschaft für Taubblindheit gGmbH / Dominique Sturz, Forum für Usher-Syndrom, Hörsehbeeinträchtigung und Taubblindheit

09:25

Summary scientific part in layman´s terms (Chair: Irmgard Reichstein)

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" (Chair: Erwin van Wijk)

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)

  Moderator: Sebastian Klaes
Oral presentations:
ProRQ (Annamarie Dillon: Clinical trial design for AON treatment of USH2A)
N.N. (N.N.: TBA)
N.N. (N.N.: TBA)
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)

  Moderator: Sebastian Klaes
Oral presentations:
Second Sight (N.N.: TBA)
Retina Implant AG (N.N.: TBA)
N.N. (N.N.: TBA)
14:30

Patient’s View, Diagnosis, Health, Psychological Aspects, Healthcare (Chair: Dominique Sturz)

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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