GalNet/EGS meeting 2018

“Coming together is a beginning; keeping together is progress; working together is success” 
Edward Everett Hale


Friday, 16.11.2018
Drinks and Dinner at the Ramada Amsterdam Airport hotel 19:30

Saturday, 17.11.2018

Welcome 09:15 – 09:30 by Prof dr Estela Rubio/Jeroen van Kempen

Session 1 09.30 – 11.00 chairs Dr Isabel Rivera/Jeroen van Bruggen Guidelines, registry, NBS and rare diseases Europa

  • GalNet Registry, a descriptive analysis (30 minutes) by Prof dr Estela Rubio/Minela Haskovic PhD
  • Guidelines dissemination, implementation (20 min) by Dr Annet Bosch/Maaike van Kempen
  • NBS, some countries do, others do not (20 minutes) by Dr Matthias Gautschi
  • European Reference Networks (10 minutes) by prof dr Eileen Treacy

Session 2 11:30 – 13:00 chairs Prof dr Estela Rubio /Jeroen van Kempen

  • New therapeutic approaches Dietary antioxidants as another therapeutic target? by Prof dr David Timson
  • Chaperon design update by Dr Wyatt Yue

Lunch 12:00 – 14:30 Parallel lunch meeting ETN members

Session 3 14:30 – 16:00 Parallel workshops

3a. Collaborative research, achievements, new projects lead dr Peter Doran
3b. Patient needs and perspectives lead Karen ‘t Hooft

Session 4 16:15 – 17:00 Discussion, conclusions, action points chairs Jeroen van Kempen/

Closure 17:15

Leave for dinner in Amsterdam 19:30

Sunday, 18.11.2018

Breakfast and checkout of the hotel 08:30

Surprise program in Amsterdam 09:30 (finish ± 12:00h)


Dear member of GalNet,

We would like to invite you to the third EGS/GalNet meeting to share and learn from the successes of our projects across the world. It is our pleasure to invite you to this meeting on the 17th of November 2018 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. On behalf of the GVN the meeting, hotel room, all meals and surprise program are offered to you. Please note that travelling expenses are for your own account.

The hotel/meeting room is in the Schiphol-airport area and only 10 minutes’ drive with a shuttle bus.

Please find attached the preliminary agenda and meeting details.
Further details (final agenda, list of participants, etc.) will be sent to you in October.

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

Use this link to register