Cystic Fibrosis Europe

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

Photo European Parliament

On 21 November 2006 Cystic Fibrosis Europe, a federation representing 30.000 patients in 30 European countries, organized its 1st “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! With the 1st European CF Awareness day we wanted to fight for equal access to appropriate care for all children and people living with this disease in Europe! The CF care in Europe should and could be improved, without necessarily having to invest a lot of money. Early diagnosis, regular follow-up by specialists, correct treatment of early symptoms and proper hygiene can prolong and save lives, but also save extra health costs. In several countries basic treatments are not available while other, more expensive but less essential, medication is reimbursed.
Ongoing efforts of CF patients, families, associations and health care workers will lead to better and more accessible CF care, and better and longer lives for all CF patients in Europe. But the patients don’t have the time to wait too long... We also wanted to make the public aware of Cystic Fibrosis and the problems patients have to cope with. Although 1 of 30 Europeans carries the gene that can cause Cystic fibrosis few people know the disease and the patients and their families have to fight for understanding and support every day.

At this first European CF Awareness Day we urged European and national authorities to do everything in their power to support these efforts and to take away all barriers to equal access to the basic treatment standards for all European CF patients. All over Europe patients and families organized awareness, information and lobbying campaigns. In Brussels CF patients, parents and representatives from the European CF community met with members of the European Parliaments to explain and discuss the problems people with CF face in Europe and suggest strategies to improve their lives. People from 12 different countries attended the meeting in the European Parliament: patients, families and representatives from national associations. Prof. Marie Johannesson, president of ECFS and Prof. Jean-Jacques Cassiman represented the health care professionals and researchers. We met 7 Members of the European Parliament (MEP) who were really interested to know how they could help to improve the situation of the CF patients in Europe. 7 MEP (and/or assistants) may not seem very successful, but for EP standards this is a huge success. Last year for instance we were invited at a patient conference on stem cells organized by the EU, with more then 300 participants from 32 countries and only 1 MEP attended! We discussed the possibilities to get more funds for CF research and they promised us to stimulate their national governments to make appropriate care more accessible for CF patients (since this is still a national competence). We were also invited to organize a next meeting in the EP on a much larger scale next year, because the MEP noticed there was a lot of work to be done and a lot of interest amongst the MEP.

Cystic Fibrosis (CF) or mucoviscidosis is the most frequent life threatening genetic disease in Europe. Sticky mucus blocks the lungs and digestive system. Although 1/30 Europeans carries the gene causing the disease and 30.000 children and young adults live with it, few people know of CF. Some patients get 40 years old…others 4, depending on where you live in Europe Help to make good care available to every CF patient !