“Roads to better care” is the theme of this year’s joint EGS/GalNet meeting.
We are looking forward to an inspiring meeting on the 16th of November in Amsterdam.
The Dutch Galactosemia society (GVN) is hosting the meeting.
The meeting will take place at the Ramada Amsterdam Airport Schiphol hotel and online via ZOOM.
Registration to the live meeting is closed, but it is still possible to join the online meeting for GallNet and EGS members.
Please connect with the EGS secretary for a link to subscribe.
(Email secretary at the ‘About the EGS’ page)
Please find the program and meeting details below.
Morning Program
| 10:00 – 10:30 | Welcome and opening | Jeroen van Kempen, Chair EGS, The Netherlands
Estela Rubio-Gozalbo, Chair GalNet, University Medical Center, Maastricht , The Netherlands Gerard Berry, co-chair GalNet, Boston Children’s Hospital/Harvard Medical School, USA
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Session: Roads to better care, research on new treatments and ongoing research |
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| 10:30 – 11:00 | Advancements treating root cause of disease
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Kent Lai, University of Utah, USA |
| 11:00 – 11:30 | A new generation of GALK1 inhibitors to impact cascade of events
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Wyatt Yu, Newcastle University, UK |
| 11:30 – 11:45 | Coffee break
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| 11:45 – 12:00 | The LOGA Study: A Longitudinal Study of Cognitive, Psychosocial and Motor Functions in Association with Brain Connectivity in Young Individuals with Classic Galactosemia | Anja Maria Vossenkaul
Matthias Gautschi
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| 12:00 – 12:15 | Transcranial Alternating Current Stimulation (tACS) as a novel treatment option for cognitive improvement: extension of the proof of concept study in Adult Classic Galactosemia | Bianca Panis |
| 12:15 – 12:30 | Q and A session
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Early afternoon program
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Roads to better care, working together GalNet/EGS sessions, moderator Gitte Østergaard, Denmark
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| 13:45 – 15:15 | Guidelines amendment and ERN Care Pathway | Annet Bosch, Amsterdam, The Netherlands
Eileen Treacy, Dublin, Ireland
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| 15:15 – 16:15 | GalNet Work session
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GalNet members |
| 13:45 – 16:15 | EGS Work session Patients’ voices on different treatment modalities and needs in care |
Emanuelle Bravo Gala, France
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| 16:15 – 16:30 | Coffee break
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Late afternoon program
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Session Roads to better care, listening to patient/families moderator Anton Fuchs, Germany
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| 16:30 – 16:50 | Summary Patients’ voices on different treatment modalities and needs in care | Clementine Bry, France |
| 16:50 – 17:15 | Summary GalNet Work sessions
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Steering committee GalNet |
| 17:15 – 17:45 | Q and A session | |
| 17:45 – 18:00 | Closing remarks and setting the date for next year’s meeting | Jeroen van Kempen, The Netherlands
Estela Rubio-Gozalbo, Maastricht, The Netherlands Gerard Berry, Boston, USA
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