Back to CFE Main Page

MINUTES ANNUAL MEETING
CYSTIC FIBROSIS EUROPE
14 JUNE 2006 COPENHAGEN

1 Welcome and roll call
25 people representing 17 different European countries and CFW were present. See list in annex. Mary Lane Heneghan (Ireland), Alicja Rostocka (Poland), Hanne Wendel (Denmark), Helena Holubova (Czech Republic), Vladimir Patras (Slovak Republic) and Birgit Dembski (Germany) sent their apologies.

2 Approval of the minutes of the GA in Crete, June, 2005

3 Approval of the agenda

4 Applications of new members
The GA accepted the applications of the following associations:
• OEF, Dutch association of CF adults
• Matio, Polish CF Foundation
• Association for CF, Thesssalonika, Greece
• Yugoslavian CF Association, Serbia & Montenegro
• CF Armenia
• Russian CF Associations from St. Petersburg, Moscou and N. Novgorod
• CF western Ukraine
• Association Luxembourgeoise de Lutte contre la Mucovisciodose, Luxemburg
The president clarified that regional associations are welcome to become a member and attend the meetings but there’s only one voice per country.

5 Annual report & finances

For a report of the projects and activities see annual report.

A form on ‘Data on CF in Europe’ was sent around to all CF associations. The goal of this study is to get a better view on the situation of CF patients and CF care in Europe and to get data to lobby for better access to care in all countries. We received data from about 10 countries. All other countries are invited to send their data as soon as possible, so we can use them for the CF Awareness day and the meeting with the EU on 21 November 2006.

The Solidarity data base was set up, to see which countries are supporting other CF associations and centers, but we’re still waiting for the forms of most countries. As soon as we have more data an overview will be available on the website.

Website: regular updates were made available. In the future we hope to get more input from the national associations.

CFE had a very active part in the preparation of the CFW/CFE Conference day in Copenhagen.

A lot of time and energy was put in the preparation of the CF European Awareneness day of November 21, 2006. You find an update on this day in annex and on the website.

We sent around a contact list to all members and countries in Europe and will update the list on the website with the data we received so far. We hope all member associations will send us their contact details.
G. Fletcher reported on the 1st meeting EPAT, European Patients Alliance for Transplantation, he attended for CFE on 11.03.2006 in Dublin (Ireland). The AG decides to become member.

Karleen reports on the idea of founding a European CF foundation to support research of some national CF Associations and ECFS. The AG reacts positive. A first meeting is planned the 24th of August 2006 in Paris.

Finances
The accounts for 2005 & budget for 2006 were discussed and approved. See annex.
The limited income is a major problem. Most countries now pay a considerable fee to CFW, but CFW informed us that due to their limited income they have no money available for CFE projects (although they offer logistic support). At both the CFW and CFE meetings there was a lot of discussion about membership fees for CFW and the use of the CFW money for Europe. Most countries felt that both CFW and CFE have an important mission and need money to be able to fulfil these missions. Some countries seem to be willing to pay an extra fee or donation for CFE; some want to split up their membership fee between CFW & CFE. But for a lot of countries it’s difficult to pay any fee.
CF Europe will have to look for additional income. All countries are invited to pass any European sponsor contacts they have on to the CFE Board (most companies have a European budget so this won’t compete with your national fundraising).

6 Election committee for 2007

Lila Beach was elected as chair and Ulrica Sterky and Anna Arellanesova as members of the election committee for 2007. They will prepare the elections for the Board of CFE at the Annual meeting in June 2007 in Turkey. They will send a call for nominations and co-ordinate the applications.

7 Other business

The Polish representatives asked if CFE is a member of IPF, but other members of the AG warned that they’re accused of being too close to the industry.

Standards of care
• Andreas Reimann reports on the efforts of Eurordis to get patients involved in the EU working group on centers of Excellence. Eurordis wrote a good position paper. He suggests we should look at the Sanco (EC) website and CFE should write a position paper.

• Ireland reports on a very successful campaign to improve the CF care in their republic. An independent report in 2004 by Dr R.M. Pollock, MPA Health Strategy and Planning, concluded that staffing levels we dangerously inadequate and cystic fibrosis services too thinly distributed over many different locations and that the lack of segregation and isolation facilities in some locations was ‘dangerous’ and created significant risks of cross infection. Thanks to heavy lobbying by the Irish CF association the situation improved considerably. A recent report of a government mandated working group supports the European Consensus on standards of care and additional staffing was allocated to CF care in Ireland (on-going funding of € 4.78m). Whoever is interested can contact G. Fletcher to obtain the report.

• Angelika Preftitsi reports that she translated the standards of care in Greek and presented it to the Greek government. The ministry replied it has to be accepted by the Greek law.

• The UK reports that their government doesn’t accept the European consensus guidelines, but doctors use it to get things done from their hospitals

The general conclusion is that the guidelines have to be spread by associations to CF professionals and authorities.

Karleen De Rijcke, June 2006

Download this document