42nd ECFS (EUROPEAN CF CONFERENCE)

A European distinction for Greece in patient advocacy

In a packed hall at the opening ceremony of the 42nd European Cystic Fibrosis Conference, which was attended by more than 2,000 health scientists and patient representatives from all countries, the Hellenic Cystic Fibrosis Association awarded Dimitris Kontopidis as Patient Advocate 2019. This is a European recognition of his contribution on a national and European level, in an institution that awards patient representatives from each country, who have demonstrated significant work for more than 5 years.

The award was presented by Mrs Jacquelien Noordhoek, President of the European Cystic Fibrosis Association CF Europe, with an extremely moving proclamation:

“This is a person whom I have known for years and who has worked tirelessly, despite the difficulties of his health, to improve the situation of CF patients in Greece and has contributed substantially: to the linking of Sismanoglio with Southampton, to the organisation of lung transplantation procedures for Greek patients in Vienna, to the resolution of issues of transport, physiotherapy, development of exercise/respiratory rehabilitation programmes and to the establishment and recognition of Cystic Fibrosis centres. An even more outstanding achievement is his contribution to the access of patients in Greece of innovative drugs targeting the causes of the disease – CFTR Modulators (Kalydeco, Orkambi, etc.).

During the years of a terrible economic crisis in Greece, he managed to change the map of Cystic Fibrosis. I have never received so many letters of support as the nomination of this wonderful man whose energy is an inspiration”

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The speech of the Honorary President of the Ηellenic Cystic Fibrosis Association, Mr. Dimitris Kontopidis, was also extremely emotionally charged in the same context when he received his award:

“I will try to describe what this award means to you in the one minute I was given:

In 2012, the situation in Greece was tragic. We were losing about one patient a month in the 20-23 age group. Cystic Fibrosis was an unknown disease, there was no hope and Greece was in a terrible financial crisis (If you remember the famous Grexit.)

Within a few years we achieved what had not been done for decades: We developed a registry with the help of ECFS (Ms. Jaquie Van Rens), started exercise programs with our friends from Germany (thanks to the ‘guru’ Dr. Helge Hebestreit), created a specialized AI Adult Team with the support of Southampton (thanks to Dr. Mary Carroll & Dr. Valia Kehagia), and CF Europe (Hilde knows the whole story and how the collaboration with Southampton started once in Serbia at a similar conference).

TODAY we have access to innovative drugs such as Kalydeco, Orkambi, slowly Symkevi as well as participation in clinical trials.

TODAY we transplant about 5 patients per year to our friends in Austria.

TODAY Cystic Fibrosis is a Brand name in Greece and we only lose 1 or 2 patients a year and we will start transplants in our country as well.

All this huge change was done with almost ZERO employees in our Association. It is the result of a group of stubborn patient volunteers, which I had the honor to lead.

If one patient with 24% respiratory function who is on a transplant list can “move the mountain” (as our President Jacquelien says), then everyone can, especially when we all work together!

Educated patients can lead and provide solutions, just trust them.

I would like to especially thank some Greek doctors who contributed to this change (such as Mr. Chanakas, Ms. Chatziagorou, Ms. Diamantea, Mr. Vogiatzis), the European Cystic Fibrosis Society and of course our leader and President Jacquelien!”

Our representatives Stavros Giannakoulakos (physiotherapist), Dimitris Kontopidis (Honorary President), Yannis Spinos (former President)

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During the Conference, there were scientific presentations with poster presentations by the children’s section of the Hippocratic Hospital of Thessaloniki (3) and the adult section of the Hospital of Sismanoglio of Athens (2).

• Α1) P236 || Does an individualised exercise program improve exercise capacity among young patients with cystic fibrosis?
• E. Hatziagorou1, S. Giannakoulakos2, C. Mantsiou1, E. Kouroukli1, L. Nousia1, A. Kampouras1, E. Kouidi2, A. Deligiannis2, J. Tsanakas1 1School Of Medicine, Aristotle University Of Thessaloniki, Pediatric Pulmonology and CF Unit, 3rd Pediatric Dept, Thessaloniki, Greece, 2School of Physical Education & Sports Sciences, Aristotle University of Thessaloniki, Thessaloniki, Greece
• Α2) P192 || Severity of pulmonary exacerbations over different ages among patients with cystic fibrosis: effect on lung function
• and ventilation inhomogeneity
• (E. Hatziagorou1, C. Mantsiou1, V. Avramidou1, E. Kouroukli1, L. Nousia1, J. Tsanakas1 1School Of Medicine, Aristotle University Of Thessaloniki, Pediatric Pulmonology and CF Unit, 3rd Pediatric Dept, Thessaloniki, Greece)
• Α3) P413 || Healthcare satisfaction, utilisation, and needs among families with cystic fibrosis
• E.-A. Chrysochoou1, E. Hatziagorou1, J. Tsanakas1 1School Of Medicine, Aristotle University Of Thessaloniki, Pediatric Pulmonology and CF Unit, 3rd Pediatric Dept, Thessaloniki, Greece
• Β1) P267 || Lung transplantation for cystic fibrosis – the experience of the largest adult cystic fibrosis centre in Greece
• E. Bourgani1, E. Stagaki1, M. Gioka1, A. Nakou1, E.-M. Antonogiannaki1, D. Papadopoulos1, F. Diamantea1 1Sismanoglio General Hospital, Adult Cystic Fibrosis Center, Athens, Greece
• Β2)  P248 || Two years´ experience of lumacaftor/ivacaftor treatment at an adult cystic fibrosis centre in Athens, Greece
• E. Stagaki1,2, E.-M. Antonogiannaki1, E. Bourgani1, D. Papadopoulos1, S. Pouriki1, A. Nakou1, T. Papageorgakopoulou1, V. Filaditaki1, I. Inglezos1, F. Diamantea1 1Sismanoglio General Hospital, Adult Cystic Fibrosis Center, Athens, Greece, 2In collaboration with Vienna General Hospital AKH Medical University of Vienna, Division of Thoracic Surgery, Vienna, Austria

Stavros Giannakoulakos (physiotherapist)

Filia Diamantea, Eleni Stagaki – Sismanoglio Hospital

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During the General Assembly of the European Cystic Fibrosis Association CF Europe, elections were held and a new Board of Directors was elected, which included Jacquelien Noordhoek (Netherlands), Dragan Djurovic (Serbia), Ilknur Gorgun (Turkey), Nick Medhurst (England), Birgit Dembski (Germany), Stefan Joris (Belgium), Betim Zllanoga (Kosovo).

The Greek delegation just before the vote (Dimitris Kontopidis, Yannis Spinos, Stavros Giannakoulakos)

From the proceedings of the General Assembly of the European Cystic Fibrosis Association CF Europe

At the announcement of the winner at the dinner between the CF Europe Clubs

(the Former President of the Hellenic CF Association Giannis Spinos, the Honorary President Dimitris Kontopidis and the Director of CF Europe Hilde De Keyser)

Former President of the European Cystic Fibrosis Scientific Community ECFS Kris De Boek