Dear GalNet and EGS members,
It is our pleasure to announce the 2023 EGS/GalNet meeting on November 11th in Amsterdam.
We will work together on our shared aim to improve the treatment and outcome of patients with Galactosaemia.
This year we will have three main areas of attention during the presentations and panel discussions:
- Brain processes, social cognition and longitudinal cognition
- Potential new therapies in classic Galactosemia
- Classical Galactosemia Guidelines 5 year in use, what are the experiences so far and do we need to update?
The meeting will take place at the Ramada Amsterdam Airport Schiphol hotel.
The Dutch Galactosemia society (GVN) is hosting the meeting.
If you didn’t get a personal invitation yet, please connect with the EGS secretary or you GalNet contact for a link to subscribe.
(Email secretary at the ‘About the EGS’ page)
Please find the program and meeting details below.
Your participation would be highly appreciated. We are looking for 1 or 2 participants per country to
act as delegates and coordinators.
|14:00 – 18:30||EGS Annual meeting Best practice sharing, actions 2023-204, etc.|
|19:30||Drinks and Dinner (buffet) at the Ramada Amsterdam Airport Schiphol hotel for GalNet and EGS members.|
Morning Program (10:00 –12:15):
|10:00 – 10:30||Welcome and opening||Jeroen van Bruggen, Chair GVN , The Netherlands
Jeroen van Kempen, Chair EGS, The Netherlands Prof. Estela Rubio-Gozalbo, Chair GalNet, MUMC+ Maastricht, The Netherlands
|10:30 – 11:15||How the brain processes language||Prof. Bernadette Jansma, Cognitive Neuroscience Department, Maastricht University, The Netherlands|
|11:15 – 11:45||Social cognition and longitudinal cognitive evaluation||Merel Hermans PhD candidate, Metabolic Diseases Amsterdam UMC, The Netherlands|
|11:45 – 12:15||Social cognition, psychosocial well-being and galactosemia||Dr. Clémentine Bry, Université Savoie Mont Blanc Laboratoire LIPPC2S, Chambéry-Grenoble, France|
|12:15 – 12:30||Panel discussion|
12:30 – 13:30
Photo and Lunch
Afternoon program (13:30 –18:00):
|13:30 – 14:15||Potential new therapies in classic Galactosemia: the evolving rules of engagement||Prof. Gerard Berry
Biochemical Genetics, Boston Childrens Hospital USA
|14:15 – 14:45||Q and A session||Jeroen van Bruggen|
|14:45 – 15:45||GalNet Work session
Brainstorm GalNet members
|Prof. Estela Rubio-Gozalbo, GalNet chair, MUMC+ Maastricht, The Netherlands|
|14:45 – 15:45||EGS session
5 year experience with European Galactosemia treatment guidelines; what works well, where can we improve?
|Jeroen and Maaike van Kempen, Chair and co-chair EGS|
|15:45 – 16:15||GalNet / EGS session
Potential Care pathway galactosemia
|Karen ‘t Hooft, Chair Medical Committee GVN
Prof. Eileen Treacy, genetic metabolic diseases, Dublin, Ireland
|16:15 – 16:30||Coffee break|
|16:30 – 17:00||Ovary preservation recent research results, do we need to update the guidelines?||Dr. Veronica Gomez-Lobo (Zoom)
Obstetrician Gynaecologist, NICHD, Bethesda, USA
|17:00 – 17:30||Q and A session||Maaike van Kempen|
|17:30 – 18:00||Set date for meeting next year and closure||Jeroen van Kempen & Prof. Estela Rubio-Gozalbo|