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Cystic Fibrosis Europe

 

Annual Meetings in Hamburg - Programme



(preliminary programme as of March 1, 2011)

Day

Date

Timing

Activity

Location

 

Tuesday

 

June 7

 

09.00 –  10.45
11.00 –  13.00
14.00 –  15.30
16.00 –  18.00
19.00 –  20.00

 

Research collaboration
CFE  - conference
CFE  - conference continued
CFE  - AGM (General Assembly)
CFE / CFW welcome reception

 

Junges Hotel

 

Wednesday

 

June 8

 

10.00-13.45

 

 

Continuous improving quality of CF care:  How patients and CF-centers can work together  -
 (see full program in mail)

 

Conference center

 

14.30 – 17.00
(to be confirmed)

ABM CF Worldwide 

To be confirmed

18.00 ECFS Opening Ceremony Conference center

Thursday

June 9

Whole day
Evening

ECFS conference
CFW President’s dinner

Conference center
To be confirmed

Friday

June 10

Whole day

ECFS conference

Conference center

Saturday

June 11

Whole day

ECFS conference

Conference center

Blue = organized by or in collaboration with CF Europe

Black: CF Worldwide, exact times and programme will be confirmed by CFWW, www.cfww.org

ECFS= medical scientific conference, organized by the medical society ECFS, www.ecfs.eu/hamburg2011


 CFE ANNUAL CONFERENCE, Tuesday June 7, 2011 HAMBURG

9.00-10.45:

Pre-meeting on  Research collaboration
for CF patient associations actively involved in CF research funding

  • all national associations sponsoring CF research are invited to attend this meeting
10.00-11.00: Registration CFE Conference and coffee
11.00-11.30:

Welcome and Roundtable
We invite each association to send 1 or 2 page(s) presenting your association to karleen@muco.be. We will send a document with the info from all associations to the participants prior to the meeting to save time!

  • each participant introduces him(her)self very shortly
  • maximum 1 slide per association - focus on 1 message: goal of the presentation is not to explain all the activities of your  association in detail, but to concentrate on the most important information the speaker wants the audience to know
  • only those associations who informed Karleen about their presentation in advance are allowed to present a slide (preferably before April 1, absolute deadline May 24)
11.30-12.30: Update on CF Treatment and Research, Prof. Dr. Stuart Elborn, ECFS president
12.30-13.30:

Lunch break (a big lunch - German fashion, cooked meal - offered by CFE)

13.30-15.30:

Workshop on “Collaborating with CF clinics, doctors and other health professionals
to improve CF care in your country”

  • Cross-border health care: opportunities & drawbacks from the new EU directive
  • What works (positive models on collaboration)
  • Which problems do we confront (examples of problems you encounter collaborating with centers and doctors in your country)
  • Discussion

We invite each association to send us examples of positive experiences and problems you experience concerning collaboration with CF clinics, doctors and other health professionals
to karleen@muco.be.  We will present a global view and invite the most interesting examples to present their experience here.

16.00-18.00:

CFE Annual Meeting (AGM)

  • Approval of new member applications
  • Annual report
  • Elections (remember to send in your application before
  • Projects
19.00-20.00 CFE / CFW Welcome reception (drinks and finger food)

Meeting Place
Junges Hotel Hamburg
Kurt-Schumacher-Allee 14
20097 Hamburg-Centrum


PROGRAMME PRECONFERENCE SYMPOSIUM,  Wednesday, June 8, 2011

CONTINUOUS IMPROVING QUALITY OF CF-CARE:

HOW PATIENTS AND CF-CENTRES CAN WORK TOGETHER.

Conference chairs: Dominique Bertrand and Martin Stern

10:00 – 10:15: Welcome and introduction
10:15 – 10:45:   Benchmarking to foster continuous quality improvement: how to start and how to use?
Michael Boyle
10:45 – 11:15:  How state-of-the art therapy can be made available to patients
– learning from a recent study on treatment-disparities in Europe.
Anil Mehta
11:15 – 11.45: Coffee break
11:45 – 13:05: Pro and Con session and debate:  Transparency:  Should CF-care centres  “open their books”  and publish treatment outcomes?
11:45 – 12:05: Pro: Erik Wendel
12:05 – 12:25: Con: Paul Wenzlaff
12:25 – 12:45: Debate
12:45 – 13:05: Reaching “difficult” patients: Experiences from a German intervention project.
Jochen Mainz and Corinna Moos-Thiele
13:05 – 13:25: How to capitalize on the cooperation between care-centres and patient groups
Karleen De Rijcke
13:25 – 13:45: Wrap-up Meeting chairpersons
Location: Conference Centre Hamburg (CCH)

 

Hotel bookings –important if you would like CFE to book a room for you!

Please find below some information about the conference venue of the upcoming CFE networking and association building conference, June 6-8, 2011, Hamburg, Germany.

  • Conference venue:
    Junges Hotel
    Kurt-Schumacher-Allee 14
    20097 Hamburg
    0049 / 40 / 419230
    http://www.jungeshotel.de/
  • Room rates:
    Single room 89 € per night, breakfast included
    Double / twin room 101 € per night, breakfast included.
  • Booking:
    If you want to book a room in the Junges hotel via CFE, send your details before April 8
    to Birgit Dembskivia email bdembski@muko.info. Please send her:
    • the names of the people who need a hotel room
    • the dates of the nights you wish to stay
    • preference for a twin/double or single room

    After April 8 CFE is going to return all rooms not made use of in order to save cancellation fees. So booking after April 8 bears the risk that there are no rooms available any more.
  • How to go there:
    Please have a look at the hotel website http://www.jungeshotel.de/, “arrival”.
    There you will find a description how to go to the hotel by car, plane or public transport.

 

Welcome reception Tuesday, June 7, from 19.00-21.00

The German CF association Mukoviszidose e.V. invites CFE and CFW participants to a welcome reception.

The reception will take place on Tuesday, June 7, from 19.00-21.00
in the Miniatur Wunderland
Im Kultur  & Gewerbespeicher
Kehrwieder 2-4, Block D, 20457 Hamburg
www.miniatur-wunderland.com

The Exhibition shows a huge miniature landscape with trains in an old storehouse in the harbor. 
The German association is very pleased to welcome you in this  great place (exactly what we need after the AGM).  

 

Visa or personal invitation

If you need a personal invitation for a visa to enter Germany or for your sponsor:
mail to bdembski@muko.info


Hygiene and cross-infection guidelines and measures

Whenever people with CF meet, there’s a risk of cross infection.  To limit this risk, all CF patients who wish to attend the meetings are urged to follow the guidelines and bring along the necessary documents before attending a meeting.

You find the necessary info and documents on www.cfeurope.org under ‘Recommendations to avoid cross infections’ on the bottom left of the homepage.

Recommendations to avoid cross infections

pdf

ANTI CROSS-INFECTION REQUIREMENTS for People with Cystic Fibrosis

pdf

HYGIENE GUIDELINES for People with Cystic Fibrosis when attending CF Related Events

pdf

CONFERENCE / MEETING RECOMMENDATIONS for People with Cystic Fibrosis

pdf

MEDICAL NOTEPAPER. For your convenience, we supply this sample medical evidence letter for you to present to the relevant party at your hospital.

 

Registration

Register for all CFE meetings before April 7!

We ask you to inform us of your presence as soon as possible by mailing your registration form to karleen@muco.be.

All CFE Europe meetings are free: all meetings on Tuesday 7 June and Wednesday morning 8 June, marked in blue in the table on the agenda, are organized by or with CFE and free of charge for all representatives of CF Associations.  If you don’t register for the preconference symposium, you will not be allowed in at the conference center on Wednesday morning!

For the other meetings, not organized by or with CF Europe you have to look at the info provided by the organizers:

  • CF Worldwide:  programme and registration procedure should be confirmed by CFWW, www.cfww.org    
  • ECFS medical scientific conference: info and registration via  www.ecfs.eu/hamburg2011

Annual Report