International Symposium on Usher Syndrome – The videos and transcripts of the USH2018

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 USH2018 Partner logos: Johannes Gutenberg Universitat Mainz, Deutsche Gesellschaft fur Taubblindheit, Boston Children's Hospital, Usher Syndrome Coalition, Leben mit Usher-Syndrom e.V., USH+TB Forum fur Usher-syndrom, Horsehbeeintrachtigung und Taubblindhelt

We are pleased to share with you the video, transcripts, slides and summaries of the 2018 International Symposium on Usher Syndrome in Mainz, Germany. More than 250 people from around the world attended the multi-day gathering in-person, and more than 150 joined the Patient Symposium via livestream, making it the single largest event ever held for the Usher syndrome community. 

We know how important it is for you to be kept informed of the most up-to-date progress from the world’s leading experts on Usher syndrome. We’re grateful to the USH2018 organizing institutions and the many people that made this event and these proceedings possible. We hope you will find the information at the links below informative and uplifting:

Video Recordings and Transcripts

Slides and Summaries

International Symposium on Usher Syndrome

The International Symposium on Usher Syndrome at the Atrium Conference Centre in Mainz on July 19-21, 2018 was a full success, an unprecedented number attendees from all over the world were represented. We want to express our gratitude to the speakers and volunteers, the foundations and sponsors. Their valuable contributions have made USH2018 a full success.

The videos and transcripts of the USH2018 Patient Symposium presentations are now available.

International Patient Symposium

All transcripts together in one PDF.

Irmgard Reichstein: Introduction
YouTube | Transcript (rtf) | Transcript (pdf)
Mark Dunning: The Power of an Usher Syndrome Community
YouTube | Transcript (rtf) | Transcript (pdf)
Christina Fasser: Welcome Address
YouTube | Transcript (rtf) | Transcript (pdf)
Dominique Sturz: Welcome Address
YouTube | Transcript (rtf) | Transcript (pdf)
Rebecca Alexander: Welcome Address
YouTube | Transcript (rtf) | Transcript (pdf)
Margaret Kenna: Diagnostic and genetics of Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Uwe Wolfrum: Cell and molecular biology of Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Gwenaëlle Géléoc: Therapy of Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Isabelle Audo: Update USHStat Myo7 and other clinical trials
YouTube | Transcript (rtf) | Transcript (pdf)
Eberhart Zrenner: Retina implant and electrostimulation
YouTube | Transcript (rtf) | Transcript (pdf)
Darija Udovicic Mahmuljin: Steps Toward Better Life: Improving access and quality of education for DB and MD children and youth through partnerships – global campaign
YouTube | Transcript (rtf) | Transcript (pdf)
Kimberley Smith: Psychosocial well-being and health-related quality of life in a UK population with Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Thomas Lenarz: Cochlear implant technology
YouTube | Transcript (rtf) | Transcript (pdf)
Mariya Moosajee: Clinical trial design for nonsense mutations treatment of USH2A
YouTube | Transcript (rtf) | Transcript (pdf)
Annamarie Dillon: Clinical trial design for AON treatment of USH2A
YouTube | Transcript (rtf) | Transcript (pdf)
Dorothea Kohlhaas: My experiences with Argus II and the better quality of life
YouTube | Transcript (rtf) | Transcript (pdf)
Alfred Stett: Subretinal Implant Alpha AMS – recent developments and achievements
YouTube | Transcript (rtf) | Transcript (pdf)
Julia Moser: Patients view to Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Claes Möller: The urgency of interdisciplinary healthcare and support for people with Usher Syndrome
YouTube | Transcript (rtf) | Transcript (pdf)
Podium discussion
YouTube | Transcript (rtf) | Transcript (pdf)
End of the symposium – farewell
YouTube | Transcript (rtf)

Please feel free to share these links with your family and friends.

 

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