Cystic Fibrosis Europe


	Latest Articles Feb 26, 2009 - *Campaigns* 8th Polish CF week - Rare Disease Day February 2009 This is already new edition of polish social campaign, which aim is to build awareness of Cystic Fibrosis – 8th Polish Nationwide Week of Cystic Fibrosis. The theme of the action in this year is “Cystic Fibrosis. Know more, treat better”. The campaign is patronaged by Ministry of Health. It is organized by Foundation for Help Families and Suffers for Cystic Fibrosis MATIO ( Polish CF Associaction MATIO) as regular, annual educational program concerning cystic fibrosis and genetic diseases. Feb 26, 2009 - *Meetings* CF Europe annual meetings 8 - 9 June 2009, Paris CF Europe invites all European CF associations and patient representatives to her annual meetings in Paris, France. Jan 14, 2009 - *Events* 3rd European Cystic Fibrosis Young Investigator Meeting The 3rd European Cystic Fibrosis Young Investigator Meeting will take place in Lille (France) from 25 to 28 August 2009. This scientific meeting is organized by the European CF patients’ organizations together with ECFS, the European Cystic Fibrosis Society, in partnership with Chiesi and the Faculty of Medicine of Lille. It aims at fostering interactions between young scientists in order to create a long-term collaborative European network of CF investigators. The meeting will cover all CF research fields, considering basic research and clinical research. Nov 30, 2008 - *Events* 3rd EUROPEAN CYSTIC FIBROSIS AWARENESS DAY - V4 CF CONFERENCE CF Europe is holding its 3rd European CF Awareness day on 21 November 2008. Main event is the Medical Conference V4 CF in Poland. Feb 1, 2008 - *Campaigns* 7th Polish Social Campaign Information about Social Campaign 7th POLISH CYSTIC FIBROSIS WEEK (25.02-02.03.2008) Nov 1, 2007 - *Events* 2nd EUROPEAN CYSTIC FIBROSIS AWARENESS DAY On 21 November 2007 Cystic Fibrosis Europe, a federation representing 30.000 patients in 30 European countries, organized its 2d “European CF Awareness Day”. Cystic Fibrosis (CF or mucoviscidosis) is the most frequent life threatening genetic disease in Europe. Sticky mucus blocks the respiration and digestion. Without an expensive and time consuming treatment children with CF suffocate! Although patients who have access to appropriate care can become 40 years and older, children who live in countries where the CF care is less developed or available still die at a very young age! Jan 2, 2007 - *Campaigns* Polish awareness initiative 6th Polish Social Campaign. February 26 – March 4, 2007 Nov 30, 2006 - *Events* Towards Equal Access to Appropriate Care For All CF Patients in Europe Cystic Fibrosis (CF or Mucoviscidose) is the most frequent life threatening genetic disease in Europe. In some countries the median age at death of people with Cystic Fibrosis is more then 35 years, in other countries the majority of children die before their 5th birthday! Guidelines for best standards of care were developed to ensure appropriate treatment in Europe. In clinics where these guidelines are followed and appropriate care is provided life expectancy is now more then 40 years old. Most children have few symptoms and serious problems can be delayed until adulthood. In regions where the disease is not yet well known and access to appropriate care is poor, the life expectancy and quality of life are still very low. Jun 14, 2006 - *Annual Reports* CFE Annual Report June 2005 - June 2006 In January 2006, Karleen visited the Polish Society for CF and met the Board, visited the CF clinic in Rabka and talked to the media and politicians about better access to care for CF patients in Poland. A full report of this visit can be downloaded from the website or sent on demand. Jun 13, 2006 - *Events* CF Europe organizes the first European Cystic Fibrosis Awareness Day The goal of this CF Day will be to raise public awareness and political interest for the problems of persons confronted with CF on a European level. We want to promote optimal standards of care in all countries of the European Union. The average life expectancy for people with CF who have access to appropriate CF care is now 40 years. But in some regions a lot of patients die before they reach adolescence or adulthood. Especially the newer EU countries stress the importance of a European CF Day and stimulate us to move forward. All over Europe awareness campaigns can take place from 17 till 26 November. National CF associations can join the ECFD or just mention it in within the frame of their own activities. May 11, 2006 - *Events* First European Cystic Fibrosis Awareness Day - 21 November 2006 MAJOR SUCCESS ALL OVER EUROPE Better awareness and more support for Cystic Fibrosis patients in Europe “On the basis of your initiative, this is the first time that patients and parents appear in public in our country in an attempt to acquaint the broader community with this disease.” CF Serbia Jan 9, 2006 - *Cystic Fibrosis Care* Warm Welcome in Frozen Poland CFE President Karleen de Rijcke brings us a report on her experience in 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. Aug 8, 2005 - *Cystic Fibrosis Care* Standards of care for patients with cystic fibrosis: a European Consensus Cystic Fibrosis Worldwide / CF Europe Conference CRETE 2005. Dr Jim Littlewood.