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Annual meeting 2016

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, 7.10.2016
17.00 Meet and greet, informal drink in the hotel
Start meeting pre discussions
19.30 Diner in the hotel
Saturday, 8.10.2016
08.15 Breakfast
General Part of the EGS-meeting
09.00 Welcome by Jeroen
09.05 Minutes of the last meeting including approval
09.15 Board and task issues
– Re-election of the boardmembers
Members EGS an GalNet
09.45 Financials by Andreas
– Results 2015
– Approval of the accounts
– Budget 2016/17
– Membership fee for 2016
10.15 Preparing the EGS/GalNet meeting 2017 in Amsterdam

10.45 Coffee and tea break
11.00 Best practices and good ideas
11.45 Miscellaneous and closure of general part of the meeting

‘Scientific’ Part of the EGS-meeting
12.00 Galactosaemia Network (GalNet)
– Status update by Jeroen
– Status registry per country
13.00 Lunch at the hotel
14.15 Website
– update of content www.galactosemia.eu
– GalNet www.galactosemianetwork.org
14.45 Website -workshop
Funding -workshop
15.45 Coffee and tea break
16.00 Website -workshop
Funding -workshop
17.30 Closure by Jeroen

18.30 Leave from the hotel for a drink in Vienna
20.00 Diner in a “Hueriger”

Hotel and Meetingroom

 The address of the hotel:
JUFA Hotel Wien City
Mautner Markhof-Gasse 50
1110 Wien
Tel: +43(0) 5 7083 700
Fax: +43 (0)5 / 7083-701
www.jufa.eu/hotel/wien
 Meeting room:
In the hotel
 Directions from Airport to Hotel:
About 17 km from de airport
A taxi is the best way to travel from the airport to the hotel.