(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.
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
