Our every breath a step closer to our healing

is our motto this year as we await the approval of innovative treatments. This was the motto for the launch of the European Cystic Fibrosis Week 2015 with the organisation of the Association’s well-established Workshop on Saturday 14 November at the premises of the Institute of Medical Biological Research of the Academy of Athens.

In a packed auditorium with patients, parents and health professionals, the Cystic Fibrosis Workshop 2015 was held in the framework of this year’s European Week. Important representatives of institutions attended, declaring their support and their genuine cooperation, contributing positively to the resolution of the issues faced by Cystic Fibrosis patients. The entire scientific community of Cystic Fibrosis and the collaborating specialties were present, reflecting the great progress made in recent years in improving the care, quality and life expectancy of patients with CF.

Greetings were given by:

Mr.Papasavas, governor of the Agia Sophia Hospital, as a supporter of the Association’s efforts, such as the inclusion of the Cystic Fibrosis Pediatric Department in the European Registry and the commitment to provide hospital wards exclusively for children with Cystic Fibrosis. Mr Papasavas concluded his address by noting his continued support for the efforts of our association.

Mrs. Tsagdi, the director of the hospital ”Sismanoglio”, actively supported the development of the C.F. unit in an independent wing, its immediate expansion to the second floor of the hospital, its official connection with the specialized C.F. centre of Southampton, and finally she committed herself to the inclusion of the Cismanoglio hospital in the home care programme.

Mr. Kammilatos, Secretary General of the Smile of the Child, then described the agonizing efforts that the Organization makes and supports with its ambulances for children with C.F., when they are urgently transported for transplantation or pre-transplantation check-ups to the Papanicolaou Hospital, as he often accompanies them himself thanks to his medical status.

The Minister of Health, Mr Xanthos, was unable to attend. However, in a recent meeting between his scientific partner, Ms Papathanasiou, and the President and Secretary General of the Association, Mr Kontopidis and Mr Spinou respectively, he committed himself to specific answers in the coming days.

Mrs. Poulou, University Fellow of the Laboratory of Medical Genetics of the Medical School of the University of Athens informed about the importance of national mutations, prenatal and gene testing in both young couples and patients respectively, pending personalized treatments.

The Workshop was under the auspices of the EOM and shortly afterwards in the 2nd session, Mr. Karabinis, President of EOM, also gave a welcome address.

All the new developments from the 38th European & 29th American C.F. Congress

were presented in the 1st session by all the specialized Cystic Fibrosis physicians who attended the above mentioned conferences and more specifically by Mrs. Hatziagorou, Mrs. Petrochilou and Mr. Igleso. At the same time, in each thematic section a ”round table” was held where representatives from each CF centre participated and there was an opportunity for interactive discussion between health scientists and the public. Thus, Mr. Kioumis and Mr. Chanakas from the Papanikolaou & Hippocrates Hospital of Thessaloniki respectively participated where, together with Mrs. Chatziagorou, there was an extensive report on the progress of gene therapy, treatments targeted at the causes of the disease and their results (KALYDEKO, ORKAMBI). Reference was also made to ATALUREN, with a simultaneous briefing Meeting by the company’s sales representatives to all physicians. Mr. Kaditis , Mrs. Loukou and Mr. Priftis from the C.F. department at ”Agia Sophia” & the C.F. clinic at ”Attikon” respectively, referred to the new developments and the importance of mental health, nutrition as well as the new inhaled antibiotics. Finally, Ms Diamantea reported on the progress in the organization of the C.F. unit at Sismanoglio, as well as the goals for the near future, while Mr Kotsifas presented and analyzed the first results of the registration of the unit’s patients in the European register, which is being done for the first time.

Closed meeting on lung transplants in the presence of,

Mr. Karabinis, President of the H.O.M. – Mrs. Tsagdi, Director of “Sismanoglio” – Mr. Droso, Director of the Cardiac Surgery Clinic “Papanikolaou” – Mr. Karaisko, Cardiac Surgeon “Papanikolaou”

Mr. Kioumi Pulmonologist-Lung and Sleep Examiner in charge of the “Papanikolaou” Hospital Unit – Mrs. Lambrou Coordinator “Papanikolaou” – Mr. Igleso Director of the “Sismanogleio” Hospital Unit
Mrs Diamantea Pulmonologist of the “Sismanogleio” Unit – Mr Kotsifa Pulmonologist of the “Sismanogleio” UnitMs Papageorgakopoulou Secretary-Coordinator of the Unit of the “Sismanogleio” and representatives of the Hellenic Association of C.F.,

Mr. Kontopidis President

Mr. Spinos General Secretary

Lung transplants were given great importance

and the situation both in our country and abroad. Mr. Karabinis, President of EOM, together with the coordinator of EOM, Mrs. Menoudakou, presented in detail the procedures and the strategy that we should follow as a country in the transplantation of patients with Cystic Fibrosis and in general in chronic diseases where lung transplantation is necessary. Of course, the cooperation of the Association as a representative of the patients with the C.F. unit of the Cismanoglio and the cardiac surgery clinic of the ”Papanikolaou” under the coordination of the EOM is essential. He received thanks from the patients themselves as he responded directly to the call of the Association for intervention when the cooperation of the Cismanoglio with the transplantation centre in Austria was interrupted due to the lack of organ donation and especially lung donation from Greece. Mr. Drossos, head of the Cardiac Surgery Unit at ”Papanikolaou” presented in detail in cooperation with his team (lung specialists Mr. Kioumis & Mr. Karaiskos, coordinator Mrs. Lambrou) the efforts they are making for a well-organized transplant center, with schedules and specifications to be able to follow up patients and later transplants and has already successfully performed a number of pre-transplant checks. At the same time, the dispatch of a pulmonologist from both Papanikolaou and Sismanoglio to the transplant center in Austria, where the vast majority of our fellow patients have been transplanted to date, has been initiated. In addition to the presentation in front of the audience, an extended meeting with the aforementioned doctors was held in order to express and synchronize the transition phase of our country in transplantation.

Moving was the description of the personal experience

of the patient who has undergone a lung transplant and of Stella Georgakis who has undergone a second transplant after the rejection of the first transplant after many years since the first one. They thus set the tone that you can have a 2nd and 3rd chance at life! With their answers to the questions posed to them, it became clear that the procedures, techniques and information about transplants have now been greatly improved. Transplantation is not a cure, but it is a solution for survival, and it should not be scary under any circumstances. Life can and should go on!

Amazing results from exercise & respiratory rehabilitation

on the quality of life of patients with Cystic Fibrosis in both children and adults were presented for the first time in Greece. Mrs. Hatziagorou and the physiotherapist Mr. Giannakoulakos presented the encouraging results of the program started for children in the framework of the cooperation between the TEFAA and the 3rd University of the Aristotle University of Thessaloniki, where the sports activities of children are monitored with special recording bracelets.Then there was an extensive presentation by An.Afterwards, an innovative program of respiratory rehabilitation for adults with CF was presented in detail by Professor of TEFAA Mr. Vogiatzis. The program is structured by a full team including the pulmonologist Mr. Kaltsakas, the occupational physiologists Mr. Anastasopoulos and Mr. Hynkiami and the physiotherapists Ms. Zelios and Ms. Karapatoucha, which will then be followed by a dietary intervention in collaboration with the C.F. Unit of Sismanoglio. Regarding this program was conveyed the greeting on behalf of the Director of the University Clinic of ”Sotiria” Professor of Pulmonology Mr.Koulouris who immediately embraced the efforts of the Association and hosted the program in the context of continuous cooperation.

Presentation of the Hellenic Cystic Fibrosis Association by the Board of Directors of the Hellenic C.F. Association (H.C.F.A.)

Nadia Proga (Treasurer), Vassilis Palios (Deputy Treasurer), Katerina Drapanoiotou (Vice President), Nikos Papanagiotou (Board Member), Giannis Spinos (Secretary General), Roula Tzonou (President of the C.I. Association of Northern Greece), Dimitris Kontopidis (President)

A cycle of successful 2012-2015 interventions for patients with C.F. has come to an end

was the title of the last session where the Association detailed how in the years of financial crisis, health care cuts and clinic mergers patients were able to realize decades-old demands by making effective interventions. The organisation of the transplantation process, the strengthening and development of the Sismanoglio unit, its link with the Southampton C.F. unit for better organisation of the department and further training of its staff, the securing of resources, the registration of patients in the European registry, the recognition of the Thessaloniki C.F. centres Hippocrates and Papanicolaou were some of them. The exercise, physiotherapy and rehabilitation programmes, which are being carried out for the first time in Greece, with their amazing results, can guarantee that they will keep the sufferers in the best possible condition while waiting for innovative treatments. At this point it was emphasized that together all Cystic Fibrosis stakeholders should take concrete decisions to ensure the best solution for all C.F. patients with unified representation and cooperation. In the same collaborative framework, the Parents’ Association of Children with C.F. N. Greece mentioned the synchronized awareness raising efforts in Thessaloniki.

Finally, what has changed dramatically and is now evident is the information and awareness of the public about Cystic Fibrosis. Compared to the recent past a lot of people know about CF, institutions support us, gynaecologists recommend prenatal screening, and journalists are in the news and often run stories about CF. The personal stories of the patients themselves, established by our Association since 2012 and shown every year on different TV channels and finally the TV spots and videos with the patients themselves describing the disease, establish a different and perhaps more effective information campaign for rare diseases, i.e. that there are patients who, despite the severity of the disease, dare and transmit the hopeful message: their every breath is a step closer to their dreams.

For more information and support the work of the Association you can click on the link www.cysticfibrosis.gr

while the new Spot on prenatal screening featuring the patients themselves can be found here!

Κλειστή συνάντηση ενημέρωσης γιατρών Κ.Ι. και Πανελλήνιου Συλλόγου Κ.Ι. για το καινούργιο φάρμακο Ataluren 
παρουσία του Τμήματος Κ.Ι. Παίδων “Αγ. Σοφία”, της Μονάδας Κ.Ι. του Σισμανογλείου, της Μονάδας Κ.Ι. του Ιπποκράτειου Θεσσαλονίκης και της Μονάδας Κ.Ι. του Παπανικολάου Θεσσαλονίκης

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