SUCCESSFUL ACTION FOR THE 3rd EUROPEAN CYSTIC FIBROSIS AWARENESS WEEK: 21-27 NOVEMBER 2011
From 21 to 27 November 2011, CF Europe and patient associations in 39 European countries organized the 3rd European CF Awareness Week, to fight for better and longer lives for all people living with CF.
Visit the 'agenda' on this website for an overview of successful action which took place throughout Europe.
Cystic Fibrosis (CF) or mucoviscidose is the most common life threatening inherited disease in Europe. Although 1/30 Europeans carry the gene causing the disease, few people know of CF. The CF week wants to make people aware of CF and make good care available to every CF patient !
Join our actions for a longer and better life for all CF patients in Europe now!
Towards equal access to appropriate care for Cystic Fibrosis patients in Europe
Depending on where they live in Europe, children with Cystic Fibrosis die before their 10th birthday; others live well into their adulthood. We canâ€™t a accept a gap in healthcare access and outcomes leading to a premature death sentence for a child or a chance to live as an adultâ€¦ depending on where you were born in Europe!
A study funded by the European Commission on comparative demographics, published in The Lancet of March 2010, shows a shocking disparity in number of Cystic Fibrosis patients and age at death between European regions, independent of population sizes and underlying gene frequencies for CF. This gap can most likely be explained by the tragic fact that the majority of children born with CF in certain regions and countries die early due to a lack of access to appropriate diagnosis and healthcare. We have to ensure now that all CF patients have equal access to current treatment now, to enable them to benefit from disease stopping therapies in the near future.
ITâ€™S TIME FOR ACTION!
Early diagnosis, regular follow-up by specialists, proper hygiene and correct treatment of early symptoms can prolong and save lives, but also save extra health costs. 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 donâ€™t have time to wait too long...
At this third European CF Awareness Week we urge 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 (as described in the European Consensus on Standards of care for CF).
The solidarity campaign for better and longer lives for people with CF in Europe
We want 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 CF, few people know of the disease and the patients and their families have to fight for understanding and support every day. We call on the public to join our solidarity actions, to support our fight for a better and longer life for all people with CF.