Cystic Fibrosis Europe

2nd EUROPEAN CYSTIC FIBROSIS AWARENESS DAY

21 NOVEMBER 2007

Towards equal access to appropriate care for Cystic Fibrosis patients in Europe

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!

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... At the first European CF Awareness Day in 2006 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. For the 2d awareness day the focus was on national activities.

All over Europe patients and families organized awareness, information and lobbying campaigns.

On this 2d CF Day they fought 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.

On the next page you can find a short overview of awareness initiatives in several countries which have been reported to CFE. Please let us know if you organized any other activities!

More information

Information on Cystic fibrosis, CF Europe and the Awareness day on this site (www.cfww.org/cfe) or contact Karleen De Rijcke, president of CF Europe: karleen@muco.be, +32/266 33 904.
Or contact your local CF association.

CFE represents patients in more then 30 member countries:

Albania, Armenia, Austria, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, France, Germany, Georgia, Greece, Hungary, Ireland, Israel, Italy, Latvia, Lithuania, FYR Macedonia, Netherlands, Norway, Poland, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland and Ukraine.

Pictures IDS

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!