15-20 November 2010
www.cfweek.eu

From 15 to 21 November 2010, CF Europe and patient associations in 38 European countries organize the 2d European CF Awareness Week, to fight for better and longer lives for all people living with CF

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 can’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 adult… 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 these 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. IT’S TIME FOR ACTION NOW!  

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 don’t have time to wait too long...

At this second 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). A meeting with members of the European parliament and Commission is planned in Brussels on November 10 and all over Europe patients and families will organize awareness and lobby campaigns.

Join 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.   Spread the information  and organize an awareness or fundraising activity in your neighborhood.

More information

For more information about the European CF Awareness Week in Europe and in your country, visit www.cfweek.eu  or contact your local CF Association.