LINK TO ONE OF OUR 52 MEMBER COUNTRIES FOR LOCAL SUPPORT, ADVICE AND NEWS

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Program and Venue

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