International Cystic Fibrosis Day

September the 8th, 2016

“Each Breath is a Step Closer to our Dreams, but we are anxious about our therapy treatment!”

“After years of waiting, this year the International Cystic Fibrosis day comes with a fact that fills us with hope: certain innovative medicines that target the cause of disease are finally available in our country. However, there are huge problems in their timely procurement, resulting in patients having to interrupt their treatment, with unpredictable and dangerous consequences for their health. Despite the agony of the patients, today at the International Cystic Fibrosis Day there was, once again, no response from the Ministry’s side.

 


δήλωσε o Πρόεδρος του Πανελλήνιου Συλλόγου για την Κυστική Ίνωση Δημήτρης Κοντοπίδης, στην πλατεία Συντάγματος παρουσία της Αντιδημάρχου Αμαλίας Ζέπου.

 

This week we were invited to the International Congress of the European Respiratory Society. There, we presented how we managed to successfully improve the healthcare services for patients with Cystic Fibrosis through the effective awareness campaign “Each Breath” and successful partnerships with health agencies, despite the financial crisis. To our surprise, H.M. Queen Elizabeth II was at the opening ceremony to salute the Congress and underline her support. Returning to Greece now, at the International Cystic Fibrosis Day, the Health Minister denied our invitation to attend the event. It is worth noting that the Association raises awareness and informs the general public on the importance of prenatal screening for CF. Our only demand is access to appropriate treatment.”

stated Mr Kontopidis, President of the Hellenic Cystic Fibrosis Association at Syntagma Square at the presence of the Deputy Mayor Amalia Zepou.

“The centers of Athens and Thessaloniki turned blue with our slogan “Each breath a step closer to our dreams” through the cycling races we organized for the 3rd consecutive year. With our bikes and our blue balloons we informed the general public about the most common hereditary disease amongst Caucasians and about the importance of prenatal screening. We highlighted that there are 500.000 carriers in our country and that one child is born with CF every week. We carried on with our initiative by setting free blue balloons in the sky with the names of patients that left us this year. We spread a message of hope: that some people with this severe disease dare so that every breath is a step closer to their dreams!”

Roula Tzonou, the President of the Association of Cystic Fibrosis Patients of Northern Greece participated from the White Tower of Thessaloniki. There, they raised awareness and fought for better healthcare services in the centers of Northern Greece. 

 

Η Ρούλα Τζώνου, Πρόεδρος Β.Ελλάδος από τον  Λευκό Πύργο στη Θεσσαλονίκης συμμετείχαν στην ενημέρωση και ευαισθητοποίηση διεκδικώντας την βελτίωση των παροχών Υγείας στις μονάδες της Β. Ελλαδος.