1. Minutes of the first Annual General Meeting of Cystic Fibrosis Europe 2004

Date: June 13, 2004, 13.00 -16.30 h
Place: Jury’s Hotel
Participants s: please see list attached

1. Welcome and roll call
The president welcomes the participants to the first general Annual Meeting of Cystic Fibrosis Europe. The delegates of nine national associations attend the meeting (see list).

2. Approval of the minutes of the inaugural meeting in Belfast, June 4
The minutes are approved.

3. Approval of the Agenda
The agenda is approved. The members welcome Mr. Jean Elie’s proposal to give a presentation about Eurordis and Mr. to explain the status of CF treatment in Albania. Birgit Dembski reports that the German tax authorities request amendments of the statutes in order to be able to acknowledge CFE tax exempt status and asks this topic to be discussed.

4. Applications of new members
The AGM welcomes three new members to CFE: The CF associations of Greece, Albania, and Macedonia.

5. Annual report and finances
Birgit Dembski presents the board´s annual report which is approved by the AGM. Please find it attached.

CFE didn’t have any expenses during its first year of existence. The board members’ travel costs and accommodation were covered mostly by their national associations. Consultancy fees, necessary because of the tax authorities’ request to amend the statutes with respect to tax exempt status, were paid by the German CF association. The only income CFE had in 2004 was a sponsoring of € 5000 by a German regional group and € 4000 because according to the decision of its board of the German CF Association divided the membership fees for CFW between both organisations. In the future, when CFE has a regular budget, there will be a formal financial report.

Amendments to the statutes of CFE:
Birgit Dembski explains the amendments of the statutes requested by the tax authorities. The AGM approves them with all votes cast.

6. Election of auditors
Two members of the German CF Association consented to act as auditors for CFE. Mr. Christian Möller and Mr. Dietmar Giesen. They both act as auditors to the German Cystic Fibrosis Association as well, are fathers of children with CF and speakers of prominent regional groups. Both are accepted with all votes cast. The AGM thanks them for their dedication. (Please find their addresses attached).

7. Election procedures for election of board members
Ingvar Frøyland presents the boards’ suggestion for the future election procedures of CFE. The board recommends option 3: Elections are to be held every 4 years. All positions are to be elected separately. The board members who served a term before can be re-elected.

The AGM however does not agree. The arguments:

• Option 1 implies that in the worst case the board would be completely changed within one election, which is not reasonable.
• Four years are a very long period. A shorter period might be more encouraging for some members to stand for election.
• A four years’ period of elections will leed to gaps if a board member should be forced to withdraw earlier.
• Hard as it is: It must be taken into consideration that CF-patients serving on the board may fall ill and become unable to continue. In these cases a shorter period is more suitable.

Finally the AGM votes with a majority of 7 votes cast for option 1 and refuses option 3 (4 votes). The AGM also decides on additional regulations:

• Some of the members have to be elected for 2 years
• President, vice president and secretary are to be elected for 4 years
• President, vice president and secretary are to be elected separately

8. Election of election commitee:
Members of the committee for the upcoming election of the board in 2005 in Crete are:

• Ulrica Sterky
• Jean Ely
• Lila Beach

Ulrica Sterky is elected chairwoman to the committee.

9. Working plan: Topics and projects for the coming year
Birgit Dembski presents the board’s working plan for the next years (see attached).
In the course of the discussion the following comments are set out:

• CFE should in the first place promote clinical research. A further function of CFE should be to serve as a platform for patient-driven research. At the moment there are four major associations actively financing scientific projects: France, United Kingdom, Italy and Germany. These associations should collaborate closely. Research projects should be more co-ordinated, so that financial resources, specific knowledge and the necessary equipment are employed most efficiently. It should also be taken into consideration that the number of patients being able to participate in studies is limited with the result that today for wider studies patients are being recruited abroad. For this reason also co-ordination of research is important.

• The question what lobbying at the EU-level can achieve was discussed controversially. Some of the members doubt that legislation will pass special laws for a single disease. Therefore it is important that all organisations of patients with rare diseases work closely together – that means good collaboration between Eurordis and CFE.

• CFE becoming a partner of ECFS is considered to be an ambitious goal. Nevertheless CFE should try to increase its patient-oriented input towards ECFS, especially with respect to compiling and implementing treatment-guidelines or research-projects. CFE should be conscious of EU regulations requesting patients groups’ participation in many fields. This was one of the reasons why Prof. Cassiman established the European CF-Network.
• Patients should not underestimate the interest of pharmaceutical companies in their organisations, not as partners, but as stakeholders. Therefore the board should try to have some of their projects sponsored by them.
• They should also raise the interest of biotechnical companies for CF, for example with respect to studies surveying the use of certain drugs (e.g. antibiotics) with special types of nebulizers (e.g. ultrasonic). Some members remark, however, that these might be problems of the countries where CF care is well established, whereas some of the “new” EU acceding countries still have to ensure that patients have access to basic treatment.

• To accept and foster projects within their research programmes the EU more and more requests patients’ involvement. One example: The current sixth EU-research frameworks programme is going to be superseded in 2007. A new programme will then begin. The third call for suggestions for the main fields of research within the new programme is out, deadline for suggestions is in November this year. CF is explicitly mentioned as one of the topics which may be supported as a “coordinated action”, a modul within this programme to foster clinical research not sponsored by pharmaceutical companies. Prof. Burkhard Tümmler. Medical University Hannover, Germany, will make an application for a joint German-French project. Being under the auspices of CFE would certainly improve their chances to be selected by the commission.

• Patients’ organisations should form a counterpart to doctors’ and scientists’ societies.

• But however important research certainly is, it is not the only topic which is essential. Additionally to foster research CFE should support the idea of establishing patients’ registries in every country and, if necessary, coordinate corresponding efforts. CFE should also promote the treatment of patients in accredited CF-centers, the identification of centers of excellence and the implementation of the consensus-statement on the standard of care in CF. This would include close collaboration with ECFS.

• A further major field of CFE activities should be to foster the exchange of experiences between the different national associations and strengthen parents’ organisations.

The AGM appreciates the boards’ suggestions and accepts the working plan.

10. Report of survey among eastern European CF associations
Helena Holubovà explains the results of a survey the board made among eastern European CF associations. The main requests for support are:

• to help the associations to lobby their national governments to get proper medicaments and treatment free of charge.
• to organize some training courses for their caregivers and doctors by specialists from other countries.
• to exchange information with other CF associations about their experience.

Please find the full report attached.

11. Eurordis
Jean Eli gives a report on Eurordis, the organisations’ goals, activities, what Eurordis already achieved, especially with respect to implementing regulations concerning orphan drugs on the EU level, and its future schemes. He expresses Eurordis stron wish to work closely together with CFE.
Please find the full report attached.

12. Report on the situation of CF care in Albania
Mr. first explains the logo of the Albanian CF association. It shows a child with a bonsai, symbolizing that a child with CF will not grow. Incidence of CF is frequent in Albania, one case of 450 newborns. The average age of death is 5,5 months, the average age 5 years. There is no CF clinic in Albania, the families do not receive the necessary drugs, diagnosis kits are rare, eg. kits for sweat tests are used up to ten times – the situation is desperate. The parents in Albania ask CFE for help. Please find the full report attached.

13. National CF day
Karleen De Rijcke presents the Belgian national CF day which developed to be a tradition within the Belgian annual CF activities. With this report she illustrates the board’s idea to work towards a European CF day. Several members explained that they are principally interested. Please find her and B. Dembski’s presentation about the German CF day attached.

14. National reports of Danish and Czech association.
Both Hanne Tübkier and Helena Holubovà prepared a presentation of their national associations’ activities. But because lack of time unfortunately it is not possible to have them presented. The board does regret this and thanks both Helena and Hanna very much for their efforts. For the AGM in 2005 the board will allow for more time for the member’s exchange of experiences.

The president thanks all participants for their valuable contributions to the discussion and ends the meeting.

June 23, 2005
Begin: 9 a.m.
End: 12.30

1. Welcome
The president, Inge-Britt Lundin, welcomes the participants

2. Approval of the minutes of AGM in Birmingham, June 2004
The members approve the minutes (unanimously).

3. Approval of the agenda
The members approve the agenda (unanimously).

4. New members
The Annual General Meeting welcomes Croatia, Latvia, Lithuania, Romania, Switzerland and Ukraine as new members of Cystic Fibrosis Europe (unanimously).

5. Annual report and finances
The members approve the president’s annual report and the finances. They approve the board’s release of their liabilities.

6. Evaluation of lay program
(Wednesday June 22) and suggestions for 2006
The lay program on Wednesday June 22 is considered to be quite satisfactory, especially because much emphasis was put on the families‘ perspective.

For the „lay day“ in 2006 the members suggest the following topics:

• to discuss the whole perspective of care (medical, patients‘, parents‘)
• to explore more detailed the impact of Cystic Fibrosis on the whole family
• to talk about nutrition and CF

They also request that European topics should have a strong impact on the program. They consider it to be difficult, though, to bring all expectations together, especially since there is only one CFW / CFE conference day. It is also a problem to assess how many families from the hosting country will attend.

7. Presentation of activities and projects; Discussion

7.1. How to foster CF care in central and Eastern European countries
Helena Holubova gives a survey on her activities: For the first time ever CFE succeeded in establishing a contact to the Ukrainian CF association, the relationship with Serbia, Croatia, Montenegro was strengthened. These countries request material help like medical devices and medicaments as well as training courses. There should be at least one CF center per country. The Czech association receives numerous inquiries how a national association can better achieve getting families involved and convince parents and CF-adults to actively contribute to the association’s activities.

The board’s idea of building a solidarity database in order to create a map showing the supportive activities in Europe is highly appreciated. The members suggest that the board sets up a suitable mailing list.

There are several suggestion with respect to further activities:

• to set up a list of the national associations‘ officials to facilitate international contacts
• to organise a meeting of the European associations‘ presidents within the ECFS / CFW / CFE conference
• to organize a conference in central Europe with Russian as conference language to facilitate the exchange of Eastern and central European associations
• CFE should offer help national CF associations to lobby their national health authorities and decision makers
• the lists of names compiled by CFW very often mention doctors as contact persons. In the future a patient or parent representing the association should be given also.
• CFE should build up binational partnerships between newly founded and older associations with the aim to learn from each other
• the role of CFE and its main target should be to create the proper environment for CF treatment within the European Union. This will help all countries in Europe and outside Europe also. The Euopean national CF associations have many problems in common, like the adequate financing of CF centers and patients’ treatment, adults‘ treatment in paediatric wards etc.
• national associations could support individual national associations‘ representatives, especially from Eastern or central Europe, to come to ECFS conferences

7.2. Relationship with ECFS and CFW
The president Inge-Britt Lundin gives a survey on the history of the CFW - ECFS relationship and summons the results of the meeting with ECFS president Prof. Gerd Döring in Milan, September 2004:

In Crete Maria Johannesson was elected president of ECFS and start her presidentship in 2006.
Inge-Britt also reports about the joint CFW-CFE board meeting having taken place on Monday. Ulrica Sterky, member of the CFW board, is appointed CFW liaison officer to CFE.

7.3. European Burkholderia cepacia center
On request of Prof. Vandamme the board by mail asked all European associations to fund the European Burkholderia cepacia center. Although some countries consented to contribute the necessary funding to secure the European Burkholderia cepacia center’s on a medium term was not achieved. Thus Prof. Vandamme had to close down his laboratory in March 2005.

7.4. European / Global CF Awareness Day
Karleen gives a presentation on the board’s idea of a European / Global CF Awareness Day in 2006 (see attachment). The AGM appreciates the idea and decides to organise such an event in 2006, Some suggestions:

• European CF Awareness Day should stand in a connection with the diverse national European CF Days. Accordingly a list of national CF Awareness Days should be presented on the CFE website.
• The day should take place in April / May 2006 between Tuesday and Thursday (because of the EP Members‘ presence in Brussels).
• The slogan could be: Breaking limits
• Set up an additional working group consisting of
• Mary Lane Heneghan; CF Association of Ireland; marylaneheneghan@eircom.net
• Aisha Ramos; Spanish CF Association; fafederacion@fibrosis.org
• Angelica Preftitsi; Northern Greece CF Association; cfthess@yahoo.

7.5. Website and homepage
Ingvar FrØyland reports about the website project. The CFE internet presentation will be put on a better place within the CFW homepage. Every member shall have the opportunity to present themselves in 5 or 6 short sentences. Soon there will be information about the Eastern European project and the European CF Awareness Day.

7.6. More suggestions:
Members miss a mission statement on the CFE website and / or a short slogan

8. Election of board members
During the AGM in Birmingham in June 2005 an election committee was set up, consisting of Ulrica Sterky (chairperson), Sweden; Jean Ely, France; and Lila Beach, Italy. They prepared this years’ election. A call for candidates was made in due time.

Ulrica Sterky presides the election. According to the statutes board members are elected for 4 years. Two members of the election committee were of the opinion that thus the statues allow half of the board to be elected for two years and the other half for 4 years. This would have offered the chance that not the whole board would have to be replaced at one time. The third member however did not agree. Therefore the election committee suggests to the AGM that all candidates should be elected for another two years. The AGM follows the election committee’s move and decides to elect the board for another two years’ period (unanimously).

Inge-Britt Lundin (Sweden) declares that she resigns as president and runs for membership. Instead Karleen DeRijcke (Belgium) runs for president. Wilhelm Bremer (Germany) withdraw from the board. Instead Vladimir Patras (Slovakia) runs as member of the board.

The following board members are elected:
President: Karleen De Rijcke, Belgium (unanimously)
Vice-President: Dr. Gerardo Tricarico, Italy (unanimously)
Secretary: Birgit Dembski, Germany unanimously)
Members: Inge-Britt Lundin, Sweden (unanimously)
Ingvar Froyland, Norway (unanimously)
Helena Holubova, Czech Republic (unanimously)
Vladimir Patras, Slovakia (unanimously)

9. Other business
The members request a proper address list containing the associations‘ presidents.

14 June 2006

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.

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

Approval of the agenda

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.

Annual report & finances

For a report of the projects and activities see annual report in annex and on the website.

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).

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.

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.

Welcome and roll call by the president

Approval of the minutes of GA in Copenhagen, June, 2006

Approval of the agenda

Approval of applications of new members

The CF associations of Austria, Bulgaria and Hungary and the Pulmonary and Allergy Patients Association of Slovenia (B .Latkovic, Ljubljana) were welcomed as new members.

OEF Holland ‘CF adult group) and the Italian website group are accepted as associated member

"Association Mukoviszidozis" from Bulgaria indicated that it is important for their local organization to be "on track" with all European guidelines, and to be part of the statistics. Their organization is a mix of 180 patients, relatives and doctors with as president Prof. Ivo Kremenski. They consider it a privilege for their patients to be part of the European register and to get more then a treatment, but a right approach and current best practice experience.
Annual report & finances

Karleen De Rijcke presents the projects and activities and the involvement of CFE in European collaboration and patient representation in the last year. The assembly accepts this report.
Karleen also presents an overview of the CFE Finances & budget . The assembly approves the accounts.

Elections 2007

Evaluation of this Board’s term
We have achieved and started some important projects in the last 4 years. The (electronic) communication could be improved and the fact that the work depends solely on volunteers represents a risk. But without money and staff we were able to get some good results, such as the CF Day and the Warsaw conference, built up a network and established a lot of contacts. We’re now an official part/partner of EurocareCF, ECORN, European CF registry, IERCF, EPAT, Eurordis and ECFS.

Elections
The Board thanks Lila and the election committee members for the enormous job they have done.
Eric Wendel, Denmark, resigned as candidate before the elections.

The other candidates were elected unanimously
Karleen De Rijcke, President (Belgium)
Gerardo Tricarico, Vice-President (Italy)
Birgit Dembski, Secretary (Germany)
Helena Holubova (Czech Republic)
Aisha Ramos (Spain)
Georgeta Nitu (Romania)

Andreas Reiman (Mukoviszidose e.v. Germany) suggested to co-opt Franck Dufour (Vaincre la Muco, France) to fill in the 7th seat. The Meeting agrees that this can be discussed within the new board.

Lay seminar: 2007 and in future
The CFE and CFW boards will continue to work together to organize a joint seminar just before the ECFS conferences.

Other business
The importance of CF registries for CF patients and the involvement in the organization and follow up of the data collection were discussed. CF Europe will write a position paper on this issue and send it around for discussion to all its members.
All the members are invited at a presentation and discussion of future CFE activities and projects in the on 13.06.2007.

Welcome
The president welcomes the participants

Roll call
See attendance list

Approval of the minutes in Belek, June 12, 2007
The minutes of the AGM in Belek, June 12, 2007, are accepted.

Approval of the Agenda
The agenda is approved
Application of new members
The Slovak Cystic Fibrosis Association, the Daniel and Evgenia Association, Bulgaria, and the Pulmonary and Allergy Patients Association of Slovenia are accepted.

Annual report and finances
Franck Dufour, directeur scientifique, Vaincre la Mucoviscidose, was co-opted to the board.
Karleen De Rijcke presents the projects and activities and the involvement of CFE in European collaboration and patient representation in the last year. The assembly accepts this report.
See enclosed annual report
Birgit Dembski presents an overview of the CFE Finances & budget (enclosed). The assembly approves the accounts.

Ongoing and future projects:

AGM and 3rd Networking Conference 2009
The participants decide to meet next year in France before the ECFS conference so that people may leave in time for Brest. Issues should be: exchange of best practice examples, capacity building issues. The French CF Association, Vaincre la Mucoviscidose, offers to host the meeting. CFE accepts most gratefully.

European CF Day on November 21, 2008
Karleen DeRijcke invites all national associations to join the European CF on November 21, 2008.

Awareness Campaign in 2009
Karleen De Rijcke announces a major awareness campaign for November 2009. On 11 November 2009 there will be a meeting with members of the EU Parliament in Brussels. Leading idea: To represent and tell the story of CF patients all over Europe. All national associations are asked to send data on CF and pictures about life with CF in their countries to be used in the media campaign to Karleen DeRijcke or Birgit Dembski. The national associations are also asked to inform CFE about contacts with their national European parliament members and to contact them themselves. Everyone is also asked to find a European celebrity to support the Awareness day as a celebrity patron. Also ask your EMP to support an exhibition in the European Parliament.

Other Business
The Polish Foundation MATIO announces a V-4 CF conference in Krakow in November 2008 (Poland, Czech Republic, Slovakia and Hun

1.Approval of the minutes of the GA in Prague, June 10, 2008
The minutes of the Annual general meeting in Prague, June 10, is approved.

2. Approval of the agenda
The agenda is approved unanimously.

3. Applications of new members
The membership of the Romanian CF association is approved.

4. Annual report & finances
See report attached
The report is approved unanimously.

5. Ongoing and future projects
See report attached
The report is approved unanimously.

6. Other business:

• Election of new auditors, Burkhard Farnschläder and Rosemarie Kiefer. They are elected unanimously

• The vice-president Gerardo Tricarico resigned. Anja Sigur from Croatia is elected unanimously for one year.

• There will be elections in 2011. Therefore an election committee is needed. The following persons are elected to be members of the election committee:
  Ulrica Pypops, Belgium
  Piotr Majdzin, Poland
  Anna Arellanesova, Czech Republic.

June 15, 2010

The meeting starts at 10.p.m.

1. Welcome and roll call
Karleen De Rijcke welcomes the members.

2. Approval of the minutes of the Paris meeting in 2009
The minutes are approved unanimously.

3. Approval of the agenda
The agenda is approved unanimously.

4. Applications of new members:
The Portuguese CF association is accepted unanimously as a new member. On behalf of CFE Karleen welcomes them and expresses her hopes for a fruitful and effective collaboration. In total CFE has 35 member countries now.

5. Annual report and financial report 2009/2010:
Karleen presents a short form of the annual report 2009/ 2010 on paper and by speech. It is approved unanimously. A 14 pages report will be sent to all members by Email. It would have been too expensive to copy it.

Andreas Reimann, Germany, thanks Karleen and the whole board for their activities. He suggests that the only way to develop CFE further is to go professional and employ a manager / administrator.

Birgit Dembski explains the financial report of 2009/2010. . Karleen explains that the Belgian association supported the CFE activities with 40.000 €.

Hanne Wendel Tybkjaer, Denmark, suggests that the financial report should list contribution of other countries also, even when they do not appear in the accounts of CFE. The CFE members express their gratitude to the Belgian and other associations for this generous support.

The members accept and approve the annual and financial report unanimously.

6. Preparing the 2011 elections
Karleen invites the members of CFE to nominate candidates for the board. According to the statutes an election board was nominated in 2009 which consists of Ulrike Pypops, Belgium, chair; Piotr Majdzik, Poland, Anna Arellanesova, Czech Republic. Ulrike explains that by end of January 2011 at latest more information on the election and the suitable forms will be sent to all members. By April 15 the candidate list will be closed.

7. Ongoing and future projects

7.1. 1st European CF week

Karleen reports that the 1st European CF week in November 2009 was a very big success. Members are invited to organize awareness campaigns for the European Awareness Days on 21 November 2010 and 2011. The next major EU campaign will be organized in November 2012. The website of the campaign in 2009 (www.cfweek.eu) was voted to be valuable, and should be continued. Karleen asks all members to contribute actively to the European CF Awareness Campaigns and to name someone for the organizing committee for the European action in 2012.

The Danish representatives suggest that November is not very convenient for a major European campaign, because autumn is a very busy period with fundraising and disseminating information on CF. Hence capacities for an additional European campaign are too small. The Norwegian representative suggests September, because in November a campaign concerning transplantation is organized in Norway which limits the association’s capacities. The German representative announces that their regional groups will join the European campaign for the first time. They will make use of an action website, facebook, brochures and other media. The Irish representative will put the issue to her board. The Hungarian representative considers the campaign as very helpful since in Hungaria public awareness of CF is not well developed. The Italian representative agrees. The LIFC especially appreciated that collaboration between the LIFC and the Italian European Parliament members was improved.

7.2. Networking
Karleen explains that currently the German CF association sponsors ECORN CF, the European expert advice on CF, until the end of the year, and that CFE was offered to inherit ECORN CF and continue it. The German representative suggest to ask the members what they think of ECORN CF and if they are interested in continuing it.

7.3. Scientific projects:
Karleen explains the scientific projects CFE was involved in.

7.4. How to go on?
How to go on? CFE currently is characterized by a limited number of board members actively driving CFE forward with the generous support of their strong national associations in terms of finances, time, and ideas, whereas other board members contribute by giving advice. There is a serious risk that CFE will not develop further if these board members should withdraw. Karleen discussed which activities and initiatives should be performed during the next years. The members agree that do so CFE needs a professional (paid) collaborator.

Karleen presents the profile of a potential employee:
Ideally CFE would engage a fulltime collaborator, based in Brussels or Bonn. These locations would ensure office space and enable support from the national association and proximity to the actual president and secretary and the offices of the European Commission.

Responsibilities:

• Support the CFE board & its members to fulfill the mission and goals of CFE
• Organize and coordinate CFE projects and programs
• Organizing the European educational program
• Preparing the European Awareness Week/Day
• Follow-up of European health policy, research and actions
• Fundraising:
• look for project and funding opportunities within EU and other sources to pay for solidarity, capacity building, education activities and research
• prepare and follow-up grant proposals
• Practical office management: support the activities of the board and other persons active in the European field, disseminate reports and other information among CFE board and CFE members
• Inform the media; carry out media campaigns in connection with specific projects

Karleen explains that a budget of 80.000€ / year would be necessary to cover ongoing programs and a fulltime post with the above responsibilities. CFE is currently involved in a European project still under discussion (IMPACCT, vaccination against pseudomonas) which would contribute to gain part of this budget but on the other hand demand time.

She recapitulates the discussion of Paris 2009 when the question of going professional came up for the first time. In autumn 2009 by writing CFE suggested to CFW a group membership for all European members within CFW, represented by CFE, with appropriate fees to be negotiated. Of course CFE members who wanted to continue their national CFW membership would be welcome to do so. CFW answered the CFW statutes would not allow such a membership model.

Karleen emphasizes that CFE currently does not receive any funding by CFW nor does CFE participate in the fees the European members pay to CFE. However, CFW offers CFE to use their website which is a valuable contribution to CFE.

How is CFE going to proceed in the future?
Karleen asks the members for their opinion. She sums up four alternatives.
1. Members pay to CFW, membership in CFE is free (actual situation since CFE was founded in2003)
2. Negotiate group membership of European members again with CFW (proposal from Paris not accepted by CFW).
3. National members give donations to CFE to allow more activities and perhaps staff.
4. National members pay membership fees to CFE

Ulrica Sterky, liaison officer to the CFW board, explains that CFW does not have a strong budget either and is going to present a very exciting and important project in this afternoon’s Annual Business Meeting for which they will need donations also. She invites all members to attend the ABM. She illustrates that CFW covers the whole world which is an important issue and would like to do much more if they had the necessary funds. She advises CFE to raise funds by contacting the European Union.

The German representatives announce that the German board wants CFE to become a strong organization in the European field and therefore decided to support CFE by 20.000 € for 3 years. Other members (Luxemburg, Switzerland, Italy, France) give to understand that their boards contemplate following the German model and support CFE by donations to strengthen it. Many CFE members encourage CFE to raise considerable member fees. They express their wish, however, to continue as members of both organizations.

The motives are to enable CFE to become a strong and proactive player in the European field. Today politics with respect to rare diseases, health and research are made in Brussels. Thus it is necessary to understand what is going on and find access to European initiatives. It is also important o be able to continue and reinforce supporting and empowering the national associations and organizing European projects and campaigns.

The Swiss representative requests clear financial regulations fixed in the statutes to direct and control the budget and provide clarity for the members. A professional auditing will be necessary if the CFE budget is expanded.

Ulrica Sterky, liaison officer to the CFW board, emphasizes that the members should wait until this afternoon’s ABM has occurred and the latest project has been presented. She warns that CFW supports other parts of the world and will be finished if countries withdraw their money from it.
Karleen sums up that there is a consensus within the CFE membership to strengthen CFE.

The German representatives explain they withdraw from CFW because the German board was no longer satisfied with the scheme of the fees. They never got an answer to their complaints. Annual negotiations as offered from CFW are not acceptable, calculable and reliable regulations are necessary. If CFW should amend the scheme Germany will return.

The Swiss representatives propose to set up a working group to formulate financial by laws to the CFE statutes. The general assembly approved this proposal and appointed the following embers:
• Andreas Reimann, Germany
• Bruno Mühlhauser, Switzerland
• Angelika Preftitsi, Greece
• Michael Beckers, Luxembourg
• Georgiana Nitu, Romania
• A member of the CFE board

8. Other business:

Angelica Preftitsi reports about the CFE involvement and contribution to the European Registry. The European Cystic Fibrosis Registry Society wants a new patient representative to join: Ulrike Pypops offers to go and is approved unanimously.
Next year’s meeting will take place in Germany, Hamburg, 2011. The ECFS conference will be from June 8-11, 2011. The CFE conference and AGM will occur on Tuesday and Wednesday, June 7-8.
The German representative proposes a pre-conference program (joint meeting ECFS/CFE) on Wednesday afternoon, about quality improvement titled ‘How patient-organisations and CF-care centres can co-operate to continuously improve quality of care.’ Possible topics of discussion could be benchmarking, patient registries, transparency and research collaboration. The other participants support this idea.

Karleen explains that from next year on each member will have to present an authorization to vote for the General Assembly which will be sent around in due time.

The president of the Spanish CF association, Tomás Castillo Arenal, welcomes CFE and thanks all active persons in CFE. He gives a report about the activities of the Spanish association and points out a current problem: CF adults withdraw from the board. Perhaps they are not satisfied with what the Spanish association does, he explains, thus the association has to be changed. The Spanish board has the goal to involve Spanish adults and invites them to participate. He invites the CFE members to the Spanish family conference on Saturday.

Karleen thanks Tomás and Aisha for all the preparations and the generous support of the CFE conference. It was a great time in Valencia with very successful meetings.

The Danish representative prompts the patients associations to urge their doctors to be open with the results of their treatment.

Karleen mentions that a (fiction) movie about everyday life with CFE will be represented in all cinemas in Belgium. The coordinator and script writer has CF and shows very realistically what CF is in a fashionable way. English and French versions are available, can be brought to other countries.

The members thank the board for their activities and explain that CFE meetings help them to define their own way, that learning the way other associations work offers good models within Europe; in a community like CFE associations like the Ukrainian are not alone, and the meetings give very specific ideas.

Karleen invites everyone to contribute, contact the board, invites them to Hamburg and thanks everyone.

The meeting finishes at 12 p.m.