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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…
1. SUPPORT TO NATIONAL CF ASSOCIATIONS
CFE wants to support CF associations in Eastern and Western Europe, first of all by offering a platform for exchange and network building.
This is possible via our website, but we can also stimulate exchange of existing communication tools, such as posters used in media campaigns or information materials for CF patients and families and the organization of common projects
Since the meeting of central and eastern European associations was a great success we want to organize similar meetings in the future. The Romanian association invited CFE to organize a meeting for their neighboring countries at the occasion of their national meeting. The ECFS conference in Prague in 2008 is another possibility.
If there’s an interest in such meetings from western European associations as well we can organize meetings around topics of particular interest to that reason.
We’ll also continue organizing meetings at the occasion of CFW meetings and the ECFS conference.
2. ACCESS TO CARE
Equal access to care is one of the primary goals of CF Europe. We try to realise this through several projects.
1. Data on CF in your country:
In 2005, 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. To lobby for better and cheaper treatments in each country, it’s important to get a clear view on which medication and treatments are available in all European 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. To be able to change the situation of CF associations we have to get a clear view of this situation first. The form can be downloaded from the website are sent on demand.
2. Standards of care
ECFS and several CF associations have written some very good consensus documents on standards of care but the access to these documents can be difficult. We were asked to take the European consenus document on standards of care in CF clinics from our website since Elsevier, the publisher of the European CF Journal (a publication of ECFS) has copyrights on this.
We discussed this issue with ECFS but were told it’s impossible to negotiate this with Elsevier. But something may be possible through EuroCareCF. CFE president Karleen is not only member of the Advisory committee but also of Workpackage 1 ‘Optimising Patient Care & CF Team Work’ whose aim is the promotion of good standards of care for CF patients in all European countries. We hope to be able to spread consensus guidelines all over Europe to be used by patient associations, health care professionals and authorities.
3. Support to national lobbying campaigns
CFE can write letters to health authorities to support national lobby campaigns. If some of the CFE Board members or CF experts are present in a country for another occasion (e.g. training programme) they could accompany local associations at their meeting with health authorities.
With ECFS and EuroCareCF we can draw ‘Scientific motivation files’ for CF treatments that are still not available for free in some countries (e.g. colistin) to show the need and cost effectiveness.
Please inform us which treatments are needed most urgently in your country so we can develop motivation files.
4. European CF Awareness day
The central theme and goal of the first CF Awareness day is equal access to care. For more information see point 6.
3. EDUCATION 1. Expert training sessions for health professionals and families
In regions where knowledge in certain areas of CF care is still know, a training by European experts could be organized by CF Europe, e.g. on physiotherapy.
The idea would be to set up a training programme by European experts for CF families and professionals, in collaboration with local patient associations. Participants should receive some material help e.g. medical equipment as an incentive to join the programme and to ensure the long term effect. Equipment connected to the training (e.g. Flutter for a physiotherapy training) will ensure the practical implementation of the training and training ensures good use of the equipment.
The international education programme can be used as an instrument to obtain other goals such as media attention and lobbying (international experts can accompany local representatives on their visit to health authorities).
This project was high on the list of priorities of the participants of the regional networkbuilding conference in Warsaw. If we can find the necessary funding, we would like to organize 1 training in 1 country and then set up improved training programmes in different countries with what we learned there.
Since training course is one of the goals of EuroCareCf we hope to work together with them to realise this project.
2. Information and education tools
CFE can make publications, info sheets and other education materials which can be interesting for several countries available via the website. At the CF conference in Warsaw it was suggested to develop a simple info sheet for schools, which every association can translate for its own use.
Please inform us on which topics you need education tools most urgently.
4. CF PATIENT REPRESENTATION
We want to put CF on the agenda and make the point of view of patients known in national, European and international platforms and organizations.
Some of the organizations and projects where we try to achieve this are:
• ECFS
• European union & Commission
• European CF Research Institute
• EuroCare CF
• ECORN
• Eurordis
• EPAT, European Patient Association for Transplant donation
5. RESEARCH COLLABORATION
Every CLf patient and family is hoping for better treatments and a final solution for CF. Therefore we have to support CF research and stimulate research oriented at improving CF care and quality of life. But resources are limited so we want to ensure that research is cost effective and patient oriented.
CFE is involved in several initiatives to work towards this goal.
1. European CF Research Institute, Verona, Italy
2. European CF Foundation?
CFE will meet the 24th of August 2006, Paris with Marie Johannesson, ECFS and several national associations to look at the possibility to set up a joined fund run by associations to support CF research in Europe and stimulate collaboration between existing (support) initiatives.
3. EuroCare CF
EuroCareCF (European Coordination Action for Research in Cystic Fibrosis) is a new project funded for three years by the European Commission (EC) and started in April 2006. . It builds on the success of previous EC-funded research projects most notably the CF Thematic Network led by Prof. JJ Cassiman.
EuroCareCF is a European forum for CF, providing all individuals working to defeat the disease with the opportunity to interact, exchange information and collaborate to achieve common goals. By coordinating and integrating fundamental and clinical research, EuroCareCF aims to translate research results into optimized clinical management and therapy development to promote good standards of care for European CF patients.
The major goals of EuroCareCF are improved survival and quality of life of CF patients and optimized clinical management and therapy development
Karleen participates in the advisory committee and in Work Package 1 (on patient care) as patient representative. A first positive result of this EU project is that it funds the European B. cepacia reference lab (Ghent, Belgium) for which CFE tried to find the necessary funding last year. You find more info on this EU project on the EuroCareCF website:
6. RAISING AWARENESS
On November 21, 2006 CF Europe will organize its first European Awareness Day to make the European public aware of CF and promote equal access to care for all CF patients in Europe.
Please look at the program and goals of this CF Day at the special annex.
We invite all countries to organize their own awareness activities in the week of the 21st of November. A press release, information and media materials and a letter for your national and European politicians and health authorities will be available via the website from 15 July 2006.
WHAT DO YOU WANT ???
Please let us know what you want!
What are your expectations for CF Europe? Do you think other projects are important?
What are your priorities ???
If you’re a patient, family, regional or national association, someone who’s involved in CF, one way or another… let us know your ideas and suggestions!
You can contact the president at karleen@muco.be or any of the other CFE Board members. We welcome all your suggestions and remarks!
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