World Cystic Fibrosis Day,
8 September 2016
“Every breath we take, one step closer to our dreams but anxious for our cure!
”After years of waiting, this year’s World Cystic Fibrosis Day finds us with a happy fact: that specific innovative drugs targeting the cause of the disease are now available in our country. However, there are huge problems in their timely supply, resulting in patients being forced to discontinue treatment, with unpredictable and dangerous consequences for their health. To this anguish of the patients, on World Cystic Fibrosis Day, there was no response from the Ministry, once again.
This week we were invited to the international conference of the European Respiratory Society. There, we presented how we successfully managed to improve the conditions of care for patients with Cystic Fibrosis through our effective awareness campaign ”every breath” and successful partnerships with health care providers during the years of crisis. At the opening of this conference we were impressed by the greeting and presence of Queen Elizabeth II, where she emphasized her support. Returning to Greece now, on World Cystic Fibrosis Day, the Minister of Health ignores us, at a time when, as volunteers, we are contributing to awareness and information about prenatal screening, simply by asking for the obvious access to our treatments. ”
said the President of the Hellenic Cystic Fibrosis Association Dimitris Kontopidis, at Syntagma Square in the presence of Deputy Mayor Amalia Zepou.
”With our motto ”Each breath a step closer to our dreams”, the centres of Athens and Thessaloniki turned blue through the cycling laps we held for the 3rd consecutive year. With our bikes and our blue balloons we informed about the most common hereditary disease in the white race and the importance of prenatal screening. We reminded that there are over 500,000 carriers in our country and that one child is born with Cystic Fibrosis every week. We continued our initiative by releasing free blue balloons in the sky with the names of the patients who ”went away” this year and let them breathe freely. We spread the hopeful message: that some people in this serious disease dare, so that their every breath is one step closer to their dreams!
Roula Tzonou, President of Northern Greece from the White Tower in Thessaloniki participated in the information and awareness raising campaign demanding the improvement of health services in the facilities of Northern Greece.
