EGS GalNet meeting 2023

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.

Friday, 10.11.2023

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.

Saturday, 11.11.2023

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