First European Cystic Fibrosis Awareness Day - 21 November 2006

INTERNATIONAL SUPPORT
FOR THE 1ST EUROPEAN CYSTIC FIBROSIS AWARENESS DAY

Einar Steensnaes
Administrative director and member of the executive board of UNESCO

The average life expectancy for people with Cystic Fibrosis who have access to appropriate care is now 40 years. But in some regions of Europe a lot of patients die before they reach adolescence or adulthood. Especially in the newer EU countries and other countries in Eastern Europe a much better health care should be given to those children and adults suffering from cystic fibrosis. We need to promote optimal standards of care in all countries of Europe.
As a member of the UNESCO board I want to ask the European Union and all European, national and regional authorities to do what they can do to achieve better and more equal care for cystic fibrosis throughout Europe.
Let this first European Cystic Fibrosis Awareness Day and this opera “Some sunny night” help us all to let words be followed by action.

Dr. Victor Boulyjenkov, Human Genetics Programme
Chronic Diseases and Health Promotion
World Health Organization (WHO)

It gives me great pleasure, on behalf of the Human Genetics Programme of the World Health Organization, to welcome you on the occasion of the 1st European Cystic Fibrosis Day, which will focus on public awareness concerning the prevention and clinical care of Cystic Fibrosis.
As you know, the World Health Organization's main objective is the attainment of the highest possible level of health for all people. To this end, WHO supports activities towards the development of medical genetics services at the national and international levels. Cystic Fibrosis remains a serious genetic disorder and, although it is now well-understood and well-controlled with effective medication available world-wide, children continue to suffer, either because of the failure to detect the disease, its tardy recognition, or through lack of access to treatment.
In order to improve the management of cystic fibrosis in developed and developing countries, WHO has closely collaborated with Cystic Fibrosis Worldwide, an International Association (of which CF Europe is a part) which is in official nongovernmental relations with the World Health Organization. Our collaboration has been oriented towards improving disease diagnosis and care, as well as to educating the public and health care workers.
I, therefore, wish you a successful and rewarding Awareness Day. May it mark the acceleration of progress towards improved care for patients with Cystic Fibrosis and further stimulate country activities and the implementation of national programmes on cystic fibrosis prevention and management around the world.

Dr. Jacques Rogge
President International Olympic Committee (IOC)

I send you my best wishes for the 1ste European Cystic Fibrosis Awareness Day and the EU-première of Thomas Stanghelle’s opera-musical “Some Sunny Night”, which offers a unique opportunity to unite culture, health, equality and sports. The dream of Ketil Moe and Marc Wang was to make sports accessible for both healthy and handicapped people and ‘to make the impossible possible’. As president of the International Olympic Committee I fully support this initiative! Sports people train several hours a day to improve their condition and to win competitions, people with CF train every day to stay alive! I wish those children and young people the strength and courage needed to keep us this daily ‘training’ and fight!

Prof. Dr. Marie Johannesson
President European Cystic Fibrosis Society (ECFS)

I am honoured to be part of the 1st European CF awareness day 21st of November 2006. It is a milestone for CF in Europe and I am convinced that this day will make a tremendous difference.
More than 30.000 people are affected by CF in Europe. It appears as a small number when we think about our whole population, but if we think about the impact this disease has on each and every patient, including his/her family, friends, healthcare professionals and researchers, the number becomes much larger. We do not yet have a cure, but we know today that we can increase the longevity from five to at least 50 years for some patients with optimal CF care by specialized care centers.
The inequality of CF care within Europe is tremendous, and we need to narrow that gap within the EU countries. Otherwise something is seriously wrong…
I believe that this gap can be narrowed by increased awareness of CF in the community. By increased awareness we can empower CF healthcare professionals and researchers to improve clinical care and speed up research so we one day have a cure for CF. Our patients and their families deserve that !

Bart Staes
Member of the European Parliament

It’s a great honour for me to welcome the European CF patients and there representatives here tonight in Brussels. The European Parliament is – indeed – a Parliament for all the citizens of Europe, not only a place where MEP’s, lobbyists and officials are making rules above the peoples’ heads.
30.000 patients in Europe? Why would they have special attention if there are other diseases like cancer, AIDS or Multiple Sclerosis? Because they die at young age? Because they have parents, family, friends who fight with them? There are much more people involved than only the patients themselves. But most of all because every European citizen – whether he’s old or young, ill or healthy – does have the right to the same treatment: as a human being, as one of the 450 million people who make Europe to what it is: a diamond with 450 million facets.
Social care and health issues are not (yet) directly linked with the European competences –But this doesn’t mean that Europe isn’t interested in it at all. Via the public means for research lots of projects concerning health are being funded. These include research on CF. It’s up to the European Institutions to go one with this. Since every citizen counts.
Very close contacts with representatives of CF Europe taught me that living with a disease like CF is a day to day struggle. I admire the courage and the hope they have, sometimes beyond every imagination. Even more to admire are the patients, members of their families and others who are trying to keep CF on the political agenda. These people – and the organizations they represent – are working all the time to make CF not only a better known disease, but also to improve the living conditions of all the patients. On a voluntary base, but with the force of their conviction. Thanks for that.

Freddy Thielemans
Mayor of Brussels, capital of Belgium

Cystic fibrosis is a genetic incurable disease which attacks the body in a terrible way. But the Belgian CF association has never given up hope and fought for 4 decades, with impressive results and progress in the medical and social field. So it’s not surprising that today Brussels is the place where patients, families, specialists and authorities meet to intensify the fight against the disease in Europe
I know that Brussels offers the opportunities necessary to spread the activities in the field of treatment and care of which this 1st European CF Awareness day is one of the examples.
Of course this wouldn’t be possible without the investment of the people responsible for the CF Association and the people active in the field. Without their awareness, their courage and their perseverance this disease would be even more critical now then it is today.

________________________________________________________________
President:
Richard Howitt MEP (UK/PSE)
Vice-presidents:
Dieter Koch MEP (PPE); Mario Mantovani MEP (PPE); Roselyne Bachelot MEP (PPE); Jan Andersson MEP (PSE); Evangelia Tzampazi MEP (PSE); Liz Lynne MEP (ALDE); Grazyna Staniszewska MEP (ALDE); Ilda Figueiredo MEP (GUE); Brian Crowley MEP (UEN); Kathy Sinnott MEP (Independents/Democrats)

To Whom It May Concern

15 November 2006

Re: European Cystic Fibrosis Awareness Day

In my role as Member of the European Parliament and President of the European Parliament Disability Intergroup – a voluntary grouping of more than 100 MEPs working on promoting the disability agenda at the European Parliament - I would like to welcome the participants of the European Cystic Fibrosis Awareness Day, which will be held at the European Parliament on 21 November 2006.

I am fully convinced of the significance of holding such an important event at the European Parliament, in the heart of the European Union. Not only will this add visibility at the EU level to the situation of persons with Cystic Fibrosis, but it may also contribute to the development of European and national laws which aim to promote and improve the rights and quality of life of people with Cystic Fibrosis in Europe.

It is an honour for me to express my support for the European Cystic Fibrosis Awareness Day and participate in the event as the President of the European Parliament Disability Intergroup.

Yours sincerely

Richard Howitt MEP
President, the Disability Intergroup
__________________________________________________________________________
President: Richard Howitt MEP, European Parliament tel:+ 322 284 7477
fax:+ 322 284 9477 email: rhowitt@europarl.eu.int
Secretariat: Janina Arsenjeva, tel: +(32 2) 282 46 02 fax: + (32 2) 282 46 09
email: janina.arsenjeva@edf-feph.org
website: http://www.edf-feph.org/apdg/index-en.htm

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