Each breath brings us a step closer to our treatment is this year’s slogan while we’re waiting for the approval of innovative treatments, thus setting the tone for European Cystic Fibrosis Week 2015 with the President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis, announcing the beginning of the events on Saturday the 14th of November, in the BRFAA. In an amphitheater teeming with patients, parents and healthcare professionals we held our annual Cystic Fibrosis Day event during the European Cystic Fibrosis Week 2015. Important representatives of various institutes attended the event, declaring their support as well as their real desire to aid in our cause, being a part of solving the issues faced by patients with Cystic Fibrosis. The entire Cystic Fibrosis scientific community attended the event, highlighting the enormous progress being made in the last few years, both in improving treatment, quality of life and life expectancy for patients with CF.
15/11/2015
Press Release
Cystic Fibrosis Anual Conference 2015
European Cystic Fibrosis Week 16-22 November 2015
Each breath brings us a step closer to our treatment
is this year’s slogan while we’re waiting for the approval of innovative treatments, thus setting the tone for European Cystic Fibrosis Week 2015 with the President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis, announcing the beginning of the events on Saturday the 14th of November, in the Biomedical Research Foundation Academy of Athens (BRFAA).
In an amphitheater teeming with patients, parents and healthcare professionals we held our annual Cystic Fibrosis Day event during the European Cystic Fibrosis Week 2015. Important representatives of various institutes attended the event, declaring their support as well as their real desire to aid in our cause, being a part of solving the issues faced by patients with Cystic Fibrosis. The entire Cystic Fibrosis scientific community attended the event, highlighting the enormous progress being made in the last few years, both in improving treatment, quality of life and life expectancy for patients with CF.
Salutations we made by:
Mr. Papasavas, Dean of the “Agia Sofia”hospital, supporting our association’s efforts, such as the induction of the Children’s CF unit in the European Registry and the provision of rooms specifically for children with Cystic Fibrosis. Mr. Papasavas closed his speech by declaring his continuous support for our association’s efforts.
Ms. Tsandi, Dean of the “Sismanoglio”hospital, actively supporting the development of a CF unit in an separate wing of the hospital, its immediate expansion to the 2nd floor of the hospital, the connection with the specialised CF centre in Southampton, while also committing to add “Sismanoglio”in the home care program.
Next, Mr. Kammilatos, Gen. Sec. Of “The Smile of the Child” described the great effort the association is going through to support children with CF with ambulances, when they’re being transported for transplantation or a pre-transplantation evaluation to “Papanikolaou”hospital, given that he’s actively escorting a lot of those children, due to his medical status.
The Minister of Health, Mr. Ksanthos was unable to attend. However, in a recent meeting of his scientific associate, Mr. Papathanasiou, with the President and the Gen. Sec. of our association, Mr. Kontopidis and Mr. Spinos, he committed to provided answers within the next few days.
Ms. Poulou, Scientific Scholar of the Medical Genetics Laboratory of the UOA School of Medicine informed the audience about the importance of ethnic mutations, prenatal screening as well as genetic screening for young couples and patients alike, while waiting for individualised treatments.
The event was under the auspices of the HNTO, while during the 2nd part, Mr. Karabinis, President of HNTO also saluted the audience.
The latest news from the 38th European and 29th American CF Conference
were presented in the 1st part, by all of the specialised CF doctors who attended the aforementioned conferences. More specifically, Ms. Chatziagorou, Ms. Petrochilou and Mr. Igglezos..Furthermore, every subject involved a “round table”with the participation of representatives from every CF centre in the country, thus enabling the interaction between health professionals and the audience. Mr. Kioumis and Mr. Tsanakas from “Papanikolaou”and “Ippokratio”hospitals of Thessaloniki participated as well, and along with Ms. Chatziagorou extensively made reports on the progress of genetic treatments, treatments that target the causes of the disease and the results of said research (KALYDEKO, ORKAMBI). A report on ATALUREN followed, with a concurrent informing of all doctors by representatives of the doctor.Mr. Kaditis, Ms. Loukou and Mr. Priftis from the “Agia Sofia”CF department and the CF unit in “Attikon” respectively described the latest news and the importance of mental health, nutrition and inhalable antibiotics. Lastly, Ms. Diamantea reported on the progress in setting up the Sismanoglio CF unit as well as the immediate goals of that unit, while Mr. Kotsifas presented and analysed the first results deriving from the inclusion of patients in the European registry.
Closed meeting regarding the transplantation of lungs, with
Mr. Karabinis, President of HNTO-Ms. Tsagdi, Dean of the “Sismanoglio”Hospital – Mr. Drosos, Head of the Cardiological Surgery Department of “Papanicolaou”Hospital – Mr. Karaiskos, Cardiosurgeon in “Papanikolaou”Hospital
Mr. Kioumis, Pulmonologist – Infectious Disease Specialist, Head of the CF Unit in “Papanikolaou”Hospital – Ms. Lambrou, Coordinator of “Papanikolaou”Hospital – Mr. Igglezos, Head of the CF Unit in “Sismanoglio”Hospital
Ms. Diamantea, Pulmonologist of the CF Unit in “Sismanoglio”Hospital – Mr. Kotsifas, Pulmonologist of the CF Unit in “Susmanoglio”Hospital
Ms. Papageorgakopoulou, Secretary – Coordinator of the CF Unit in “Sismanoglio”Hospital, and the representatives of the Panhellenic CF Association, Mr. Kontopidis, the President and Mr. Spinos, the Gen. Sec.
Lung transplantation was a focal point
as well as the situation in our country and abroad. Mr. Karabinis, President of the HNTO,along with HNTO coordinator Ms. Menoudakou analysed the procedures and the strategy our country will need to follow regarding the transplantations that patients with CF undergo, and also about chronic diseases in which lung transplantation is necessary. Of course, collaboration is needed between the Association as patient representatives and the CF Unit in “Simanoglio”, as well as the cardiosurgery unit of “Papanikolaou”, under the watchful eye of the HNTO. He received thanks from patients as he immediately responded to the Association’s call to intervene when “Sismanoglio”ceased communications with the transplantation centre in Austria, due to the lack of organ donations, and more specifically of lungs, from Greece.
Mr. Drosos, head of the Cardiosurgery Unit in “Papanikolaou”analysed, along with his team (pulmonologists Mr. Kioumis & Mr. Karaiskos, and coordinator Ms. Lambrou), their efforts to plan a well organised transplantation centre, including timetables and requirements in order to be in a position to provide follow ups for patients, as well as transplantations down the road. The centre has already hosted a successful series of pre transplantation evaluations. At the same time, we’ve already planned to send a pulmonologist from “Papanikolaou”and from “Sismanoglio”to the AKH transplantation centre in Austria, where most of our members have received transplants so far. Apart from the presentation, a separate meeting took place with the aforementioned doctors, in order to share common goals and plan for this transitional phase that our country is going through regarding transplantations.
The touching personal experience
A femle patient who underwent a lung transplantation and Stella Georgaki who underwent a second transplantation after having rejected the first transplant after many years since the first one, sent out the message that you can have a second or even a third chance in life! By answering the questions of the audience, they made it pretty obvious that the procedures, techniques and information regarding transplantations have improved vastly. Transplantation may not be a cure but it is a means of survival and it shouldn’t scare us. Life can and must go on!
Amazing results with exercising & respiratory recovery
in the quality of life for patients with Cystic Fibrosis, both children and adults, were released for the first time in Greece. Ms. Chatziagorou andphysiotherapist Mr. Giannoulakos presented the encouraging results of the children’s program, as part of the collaboration between TEFAA and the 3rd University Clinic of the Aristotle University of Thessaloniki, monitoring the athletic activities of children with special recording bracelets. Next, Assistant Professor of TEFAA, Mr. Vogiatzis presented an innovative respiratory restoration program for adults with CF, in which we have the first instance of intermittent exercising while providing oxygen support. The program is implemented by a full team that includesPulmonologist Mr. Kaltsakas, ergo physiologists Mr. Anastasopoulos and Mr. Chinkiamis, physiotherapistsMs. Zeliou and Ms. Karapatoucha,with the delayed addition of nutritional intervention along with the CF Unit in “Sismanoglio”. Head of the “Sotiria”university clinic, Professor of Pulmonology Mr. Koulouris commented on the program via a representative, as a sign of his embracing the association’s efforts and his desire for continuous collaboration.
Presenting the Hellenic Cystic Fibrosis Association – Presented by Dimitris Kontopidis (President of HCFA)
CF Association (HCFA) Board of Directors, Nadia Proga (Treasurer), Vasilis Palios (Ass. Treasurer), Katerina Drapaniotou (Vice-president), Nikos Papanagiotou (Member), GIannis Spinos (Gen. Sec.) – Representative of the N. Greece CF Association Roula Tzonou (President)
A series of successful interventions for 2012-2015 is complete for patients with CF
was the title for the last part, presented by the President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis. Mr. Kontopidis displayed in detail how, even amidst the economic crisis, cutbacks in healthcare funds and the merging of clinics, patients actually managed to achieve goals that were unattainable for decades. Organizing the whole transplantation process, improving and upgrading the “Sismanoglio”unit, the connection established with the Southampton unit, the improvement in the department setup and the continuous training of the staff, collecting resources, patient participation in the european registry, the recognition of the “Ippokratio”and “Papanikolaou”CF units in Thessaloniki were some of the goals achieved. The exercising, physiotherapy and restoration programs are being implemented for the first time in our country with amazing results, thus enabling patients to stay in the best possible form while waiting for the innovative treatments.At this point, it was made clear that all stakeholders in the CF front will have to jointly make decisions that will guarantee the implementation of the best possible solutions for the entirety of the CF population in our country. In that collaborative spirit, President of the Northern Greece Association for Parents of Patients with CF, Ms. Tzonoudescribed the modern methods of raising awareness that the association is implementing in Thessaloniki.
Lastly, the most obvious and impressive change has been observed in the awareness of the general public regarding CF.Compared to the not so distant past, lots of people are now aware of CF, we are receiving support from various institutes, gynecologists suggest prenatal screening and reporters often release stories about patients with CF. The personal stories of our patients that the association established in 2012 and which are broadcasted in various networks every year, as well as our TV spots and videos with patients talking about the disease combine to create a much more efficient awareness campaign on rare diseases, explaining that there are patients who, despite the severity of the disease, dare to spread the hopeful message: each breath is a step closer to their dreams.
For more information
and to support our Association’s efforts you can visitwww.cysticfibrosis.gr. You can watch ournew TV spot regarding prenatal screening with our patients starring,here!here!
Closed Meeting to doctors : presentation of ”Ataluren”
Κος Καδίτης Επίκουρος Καθηγητής Παιδοπνευμονολογίας Παίδων “Αγ. Σοφία”, Κος Παπασάββας Διοικητής Παίδων “Αγ. Σοφία”, Κος Τσανάκας Καθηγητής Παιδοπνευμονολογίας “Ιπποκράτειο” Θεσσαλονίκης, Κος Καραϊσκος Καρδιοχειρουργός “Παπανικολάου” Θεσσαλονίκης
