GalNet/EGS Meeting 2019

“If you want to truly understand something, try to change it”
Kurt Lewin


Friday October 11:
13.00 – 18.00 General meeting for EGS members
19.30 Drinks and Dinner at the Park Inn City West hotel
Saturday October 12:
09.15 – 17.15 Scientific meeting for GalNet representatives and EGS members
20.00 Dinner in Restaurant Olijfje, centre of Amsterdam
Sunday October 13:
9.30 – ± 12.00 Cultural programm: Visit to the famous Zaanse Schans

Hotel and Meetingroom

Park Inn Amsterdam City West
La Guardiaweg 59
1043 DE Amsterdam
The Netherlands

+31 (0)20 242 00 00

Directions from Schiphol airport

The Sprinter train takes you to Amsterdam Sloterdijk
in 10min (350m from the hotel).
Trains leave every 10/15 minutes.
Find more information in this Planner

Subjects Scientific Meeting

  • lessons from the GalNet registry; The natural history of classic galactosemia
  • The natural history of Galk Deficiency
  • International guidelines,  update on dissemination
  • Aldose reductase inhibitors
  • GALT mRNA therapy
  • Grant applications
  • Patients knowledge strategy; managing expectations
  • Most Significant Change (MSC) exercise on the value and future goals of EGS and GalNet

Visit to Zaanse Schans

Zaanse Schans (Dutch pronunciation: [ˈzaːnsə ˈsxɑns]) is a neighbourhood of Zaandam, near Zaandijk, Netherlands. It is best known for its collection of well-preserved historic windmills and houses.

Zaanse Schans is one of the popular tourist attractions of the Netherlands and an anchor point of the European Route of Industrial Heritage (ERIH).



Dear GalNet representative,

We would like to invite you to the 2019 EGS/GalNet meeting to share and learn from the results of projects across the world. It is our pleasure to invite you to this meeting on the October 12th in Amsterdam to work on our shared aim to improve the treatment and outcome of patients with Galactosaemia.

The Dutch Galactosaemia society (GVN) is hosting the meeting again. As before, the GVN will cover the costs for the meeting, hotel room, meals and the Sunday-morning program. Please note that travelling expenses are for your own account.

We booked a nice hotel/meeting room in central Amsterdam and only 2 minutes’ walk from the railway-station Sloterdijk; trains from/to Schiphol and city-centre leave every 10 minutes.

We are still working with the board of GalNet on the final agenda, please find attached the preliminary agenda and meeting details.
Further details (final agenda, list of participants, etc.) will be sent to you in September.

Your participation would be highly appreciated. We are looking for 1 or 2 participants per country to act as delegates and coordinators.

Looking forward to your registration at your earliest convenience, so we can plan all arrangements.
If you have any questions or remarks, please feel free to contact us.

Looking forward to meeting you in Amsterdam.

Kind regards,

Prof. dr. Estela Rubio-Gozalbo                       Jeroen van Kempen
Chair of the GalNet                                            Chair of the EGS
On behalf of the Steering Committee