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- 19-01-2021January 2021 Newsletter
Venue
Pentahotel Wiesbaden
Abraham Lincoln-Straße 17,65189 Wiesbaden, Germany
Phone : +49(0)611797700 info.wiesbaden@pentahotels.com
www.pentahotels.com/en/hotels/wieph-wiesbaden/hotel-information/
Draft program 2017
Friday 27th October
Arrival
17.30 Dinner and welcome
19.30 Speed dating/getting to know each other TBC
Communication skills, trust walks, why me?
22.00 Close
Saturday 28th October
08.30 Welcome Anne-Grethe / Vesna
08.45 About the EGA Anne-Grethe/ Vesna
Who we are & our work programme(past, present, future)
The Rare Disease landscape, EGA and national associations
Go with Gaucher – what was done until now
09.45 Refreshments
10.15 About Gaucher Disease: Prof. Claus Niederau
What it is; how it’s treated; psychological issues; Q&A Germany
12.00 Lunch
13.30 Being a Gaucher patient - Break-out sessions TBC
Education, work, raising a family, practical issues on treatment,
daily life issues/challenges
15.00 Refreshments
15.30 How to make a drug TBC
17.00 Close
19.00 Dinner – out of hotel
Sunday 18th November
08.45 Good morning Vesna
09.00 Workshops: TBC
Public relations – how to tell your personal story
Clinical studies – what is it, how does it work, why participate, what to be aware of
1-2 other subjects based on feedback from participants
11.00 Refreshments
11.30 A holistic approach to care TBC
12.00 Wrap-up session – groups/feedback plenary Vesna / Anne-Grethe
What and how can I do anything for young patients in my country?
What would be good projects for the EGA to work with
12.45 Future plans / closing remarks Vesna / Anne-Grethe
13.00 Lunch and farewell