WHAT IS CYSTIC FIBROSIS EUROPE ?

Cystic Fibrosis Europe is the federation of national European CF Associations and a subdivision of Cystic Fibrosis Worldwide.
CFE represents persons with CF and their families in Europe. It was founded at the European CF Conference in Belfast in 2003. So far 25 national CF Associations are member of CF Europe.
CFE works in close cooperation with other national, European and worldwide organizations, groups and institutions of similar aims and objectives.

The main objectives of CF Europe are:

• to improve the quality of life of Cystic Fibrosis patients and their families in Europe
• to represent and defend the interests of CF patients and their families in all walks of life
• to raise public awareness and understanding of the concerns of the CF patients and their families
• to promote appropriate medical care for Cystic Fibrosis patients everywhere in Europe

In order to realise its objectives, CF Europe looks for funding via sponsoring, donations and subsidies.


2nd CF European Network building Conference

The primary aim of this meeting is to support patient network building and exchange, reinforce patient associations, define the needs and develop strategies to improve care and quality of life in Europe. The conference language will be English. The network building conference takes place The focus is on exchange of experiences and information. You will be able to participate in 3 workshops: on Building strong associations, access to care and fundraising.
[ More information ]


7th Polish Social Campaign

• Information about Social Campaign. 7th POLISH CYSTIC FIBROSIS WEEK ( 25.02-02.03.2008)


European Cystic Fibrosis Awareness Day 2007

• Report: 2nd EUROPEAN CYSTIC FIBROSIS AWARENESS DAY - 21 NOVEMBER 2007

• National awareness campaigns in Europe



European Cystic Fibrosis Awareness Day 2006

MAJOR SUCCESS ALL OVER EUROPE

On 21 November 2006 Cystic Fibrosis Europe, a federation representing 30.000 patients in 30 European countries, organized its 1st “European CF Awareness Day”.

At this first European CF Awareness Day we urged European and national authorities to do everything in their power to support these efforts and to take away all barriers to equal access to the basic treatment standards for all European CF patients. All over Europe patients and families organized awareness, information and lobbying campaigns. In Brussels CF patients, parents and representatives from the European CF community met with members of the European Parliaments
[ Full article ]

- Report: A Major Success
- Opera-Musical
- Enthusiastic reactions
- Towards Equal Access to Care
- Give them a chance to live
- National initiatives to increase awareness
- International support 
- Living with CF in Europe: Serbia, Latvia, Poland, and Macedonia

EuroCareCF Newsletter
European Coordination Action for Research in Cystic Fibrosis
Issue 3, December 2006 - Download PDF

In this issue...
• European Registry
• Participating Countries
• Registry Objectives
• Description of Work
• Data Protection and Patient Consents
• Registry Software
• Example Reports
• Implementation Plan for Europe
• Demographic Data for the Registry
• Interesting Links
• Forthcoming Events
• Contacts
• Sample Patient Consent Information Sheet & Form
• Explanatory Information for Patient Consents

www.eurocarecf.eu


Strategies for the Future - Copenhagen June 2006

At the CF Europe meeting on June 15, 2006 in Copenhagen possible strategies and future projects were discussed. With these strategies we hope to work towards fulfilling our mission and realising our goals:
• to improve the quality of life of Cystic Fibrosis patients and their families
• to promote the optimal diagnosis and treatment of Cystic Fibrosis in Europe
• to represent and defend the interests of CF patients and their families in all walks of life
• to raise public awareness and understanding of the concerns of the CF patients and families
• to provide a forum for discussion & exchange of views and experience on all issues related to CF
Of course the realisation of all these projects will depend on the available resources…
[ Full article ]


CF Russia

In June 2006 CF physiotherapists Jean Chevaillier (Belgium) and Vera Schmiegel (Germany) joined a humanitarian mission to Russia. They were accompanied by Ingeborg Grote, CF mother, Alfons Buts from Caritas Germany and 2 interpreters.
This mission was made possible thanks to the support of several German self-help groups, the Christiane Herzog Foundation, Caritas Germany, Pari and the Belgian CF Association.

The physiotherapists taught essential elements of the daily treatment and practiced several techniques with CF patients, families and physicians. Mrs. Grote shared her experience with the Russian parents.
[ Full article ]



Central & Eastern Europe
Cystic Fibrosis Network Building Conference
Cystic Fibrosis Europe organized its first Central & Eastern European CF network building conference from 21 to 23 April 2006 in Warsaw, Poland.
[ Full report ]

Polish CF association

CFE President Karleen de Rijcke brings us a report on her experience in Poland.

WARM WELCOME IN FROZEN POLAND
The Polish CF association, Polskie Towarzystwo Walki z Mukowiscydoza, invited me to visit Poland in order to share experiences and to see how to improve the care of CF patients in Poland.

The goal of my visit was to generate more support for CF patients by showing health authorities that Polish CF care should be improved and that it could be improved with a modest amount of financial support.
[ Full article ]

Polish awareness initiative

6th Polish Social Campaign.
February 26 – March 4, 2007
[ More information ]





DONATIONS WELCOME
In order to realise its objectives, CF Europe looks for funding via sponsoring, donations and subsidies.

Cystic Fibrosis Europe
Account number: 8 303 900
IBAN: DE 87 370 20500 000 8303900
BIC-Code: 370 205 00 / BFS WDE 31


Every European CF Association can apply for membership. There’s no membership fee. Contact our secretary or one of the Board members if you’re interested or if you would like more information.