Three main determinants of reaching a significant research activity level in a rare disease are the existence of patient organizations, patient registries and international networks. Quote: Orphanet RDR study, 2010
As we fully support above quote we organize the EGS annual meeting to facilitate the cooperation between international Galactosaemia patient and professional networks.
Program
| Friday June 5: | |
| 13.00 – 18.00 | General meeting for EGS members |
| 19.30 | Meeting with professionals arriving on Friday |
| 20.30 | Dinner in the hotel |
| Saturday June 6: | |
| 09.15 – 17.30 | Scientific meeting for EGN representatives/specialists and EGS members |
| 20.30 | Dinner in Platja de Castelldefels (on the beach). |
| Sunday June 7: | |
| 9.30 – ± 12.00 | Surprise program |
Hotel and Meetingroom
NH Sant Boi
Ctra. de Santa Creu de Calafell, 101
08830 Sant Boi de Llobregat, Barcelona
Tlf. +34 93 6358185
http://www.nh-hotels.com/hotel/nh-sant-boi/
The meeting room is in hotel NH Sant Boi
Directions from airport to hotel:
About 10 minutes from the airport El Prat (5.5 km)
A taxi is the best way to travel from the airport to the hotel (10 minutes)
Subjects Scientific Meeting
- International patient registry, progress
- International guidelines, interim update
- Ongoing research-projects, progress
- Dialogue on themes, aims and priorities
Agenda Scientific Meeting
09.15 Welcome by the chairman
09.30 1. Galactosemia Network update by Dr. Estela Rubio, Prof. Dr. Eileen Treacy
Including International patient registry and International guidelines
2. Update per country by country delegates
11.00 Coffee break
11.20 3. Update per country – continued by country delegates
4. Discussion on registry and presented updates
5. Rarecommons project by Dr. Mercedes Serrano
13.15 Lunch
14.30 6. Parallel theme discussion sessions:
a. Network: aims and priorities, including research
b. Patients: issues bothering the patients most
c. Registry: brainstorm on handling of data: how to use this tool to improve knowledge, which questions to answer and covering different aspects
16.00 Coffee break
16.20. 7. Summary of Network aims and priorities by group representative
8. Summary of Patients issues and priorities by group representative
9. Summary of Registry issues by group representative
16.50 10. Discussion on presented subjects, conclusions and action points
17.15 11. EGS-meeting 2016 Set date
17.30 Miscellaneous and closure by the chairman