Dear Colleagues, Ladies and Gentlemen,

There are over 40,000 patients with cystic fibrosis (CF) in Europe, but depending on where they live, some die before their 10th birthday; others live well into their adulthood.  Solutions for better health outcomes and survival at a relatively low cost are possible, if some important steps are taken towards equal access to care.
We invite you to a meeting to discuss the disparities and possible solutions to diminish the gap in access to care and chance to survival for people with CF within Europe.

We can’t accept the wide gap in healthcare access and outcomes sentencing you to a premature death as child or a chance to live as an adult… depending on where you’re born in Europe!

A study funded by the European Commission on an inter-country comparative demographics of the European Cystic Fibrosis population, published in The Lancet of March 2010, shows a shocking disparity in number of patients and age at death between older and newer EU member states, independent of population sizes and underlying gene frequencies for CF. This disparity can most likely be explained by the tragic fact that the majority of children born with CF in these new EU countries die in early childhood due to a lack of access to appropriate diagnosis and healthcare.
This gap is especially painful given affordability of care and the recent scientific progress which promises curative treatment of CF. It is of our prime responsibility to ensure that all patients have equal access to current treatment modalities now, to enable them to benefit from disease stopping therapies in the near future. It is time for action now! 
Your efforts could create conditions for a quantum leap towards better treatment and care for patients affected by CF and by example, help other rare diseases throughout Europe.

We therefore look forward to meeting you to discuss possible strategies to fight health inequalities and to enhance adequate access to diagnosis, therapy and survival for Cystic Fibrosis patients and their families everywhere in Europe. Over 40,000 lives are at stake – please help us now by coming to discuss the new study’s findings and possible solutions.

Kind regards,

Karleen De Rijcke, President CF Europe		Dr Peter Liese, MEP