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Cystic Fibrosis Europe

Contact Information

Hilde De Keyser
hilde@muco.be
0032 - (0)2 61 32 716

Board Members

President
Karleen De Rijcke
Belgium
karleen@muco.be
Vice-president
Jacquelien Noordhoek
The Netherlands
j.noordhoek@ncfs.nl
Secretary:
Birgit Dembski
Germany
BDembski@muko.info
Board members
Anja Kladar
Croatia
anja.kladar@gmail.com
Franck Dufour
France
fdufour@vaincrelamuco.org
Snezana Bojcin
Macedonia
snezanabojcin@gmail.com
Reto Weibel
Switzerland
reto.weibel@swissonline.ch

Standards of care

Standards of care
Power Point Presentation
CFWW/cfe Conference CRETE 2005 Dr Jim Littlewood
PTT (10 Mb)

Interesting Links

The European Cystic Fibrosis Society (ECFS)

European Cystic Fibrosis Clinical Trial Network

European CF patient registry

IMPACTT.eu

The ECFS is a Society of European and international experts in all fields of CF research.

"The European Cystic Fibrosis Clinical Trial Network is a network of CF centers, aiming at intensifying clinical research in the area of cystic fibrosis and to bring new medicines to the patients as quickly as possible."

The "ECFSPR" is a registry holding data on CF patients throughout the European Union and some of the neighbouring countries over an extended period of time. Goals of the Registry are to increase the knowledge on CF, to determine clinical effectiveness of health care, for comparing and improving standards of care for CF patients, to support health care service planning and for research purposes.

The IMPACTT project will complete a clinical phase III trial, to demonstrate the critical preventive and therapeutic effects of a pioneering intervention therapy (based on the avian polyclonal Anti-Pseudomonas IgY formulation) for chronic infection of Pseudomonas aeruginosa in CF patients. To this, a parallel objective is to explore ways of meaningfully involving patients and family members into clinical CF research. The IMPACTT Project started on January 1st 2011 and is a collaboration between ten partners from six European countries, supported by the European Union Seventh Framework Programme.

Recommendations to avoid cross infections