The 5th Southeast European Conference on Cystic Fibrosis was held in Greece!

The two-day conference took place on Saturday and Sunday, October 4 and 5, this year in Greece and more specifically in Thessaloniki. It was organized by the European Cystic Fibrosis Patients Association CF-Europe with the support of the Greek Cystic Fibrosis Associations and was a great success.

This conference is organized every year in countries of South-Eastern Europe in order to strengthen the Cystic Fibrosis community in each country. So this year was a great opportunity for patients, parents and health professionals of C.F. in our country to be informed about all the news and the latest developments in the disease and its treatment across the spectrum by experienced scientists of the European scientific community of the disease.

Rich topics with important issues concerning parents, patients and health professionals

Such as nutrition by the President of the European CF Nutrition Group and Chief Children’s Dietitian of the Royal Alexandra Children’s Hospital in Brighton, England, Cris Smith, psychosocial care for children and parents by the Clinical Psychologist of the CF Centre of the Necker Children’s Hospital in Paris, Maya Kirzanbaum, and for adults by the Psychologist of the Adult CF Reference Centre, of the University Hospital “Erasme” in Brussels, Araxie Matossian.

There was an extensive physiotherapy presentation by the physiotherapist of the C.F. Centre in Lund, Sweden and member of the International Group of C.F. Physiotherapists, Louise Lannefors and Sarah Payne, Physiotherapist of a paediatric pulmonology team and member of the International Group of C.F. Physiotherapists at Southampton Hospital, England, adapted for patients and physiotherapists, which will continue in a two-day presentation at Agia Sophia Children’s Hospital to physiotherapists from Athens.

Participation of Greek health professionals

It is worth noting that the attendance of both physiotherapy students and Greek health professionals related to Cystic Fibrosis was characteristic, confirming the positive development in the information and specialization of health professionals.

The majority of the nursing staff, physiotherapists and pulmonologists of the Cystic Fibrosis Department of the Cismanoglio participated in order to keep informed and to participate in the effort to organize an adult unit in our country. So the Director of the adult department in Southampton and speaker at the conference Dr. Mary Carroll, apart from her important presentations on infections, confirmed the mission for the first phase of specialization of Greek physiotherapists in the framework of the Sismanoglio-NHS Southampton interface, contributing in this direction, following the interface of the two hospitals held in May by the Hellenic Cystic Fibrosis Association (H.C.F.A.).

New treatments, registry and transplants

Once again, a presentation of new treatments targeting the causes of the disease was given by the Research Coordinator and member of the Dutch Cystic Fibrosis Association Dr. Vincent Gulmans, which is more than encouraging! They greatly improve the quality of life of patients, virtually eliminating the symptoms, with a gradual improvement in important indicators such as respiratory function (FEV1) and weight (BMI)! For homozygotes of the ΔF508 mutation, approval of the drug candidate by the European Medicines Agency (EMA) is expected in 2015, while for heterozygotes of this mutation clinical studies are in phase 2 and 3! Results from gene therapy, where research had been stalled for several years, are also encouraging.

The importance and benefits of the European registry were once again highlighted with comparative tables also by Dr. Vincent Gulmans. He mentioned the participation of Greece with the centres of Thessaloniki and the contribution of the responsible doctor of the Aristotle University of Thessaloniki, Mrs. Elpida Hadjiagorou. The inclusion of the Athens centres is also expected, which among other things give the opportunity to participate in clinical treatments that were also presented at the global level.

Finally, the requirements and conditions regarding transplants performed in patients with Cystic Fibrosis at the global level were presented by the Director of the Transplant Unit in Brussels, Prof. Dr. Christiane Knoop. The importance of choosing the ideal time for referral for pre-transplant screening to ensure that the transplantation has the best possible outcome was highlighted. It was stressed that transplantation is a survival solution and not a cure.

The contribution of the conference to the Greek C.F. community.

Warm thanks and commemorative gifts were given by the President of the Hellenic Cystic Fibrosis Association (H.C.F.A.), Giannis Spinos, to the President of the European Cystic Fibrosis Association Karleen De Rijcke and the secretary and coordinator of the event Hilde De Kyser at the joint dinner between Greek and foreign Cystic Fibrosis patient associations and the foreign speakers.

Dimitris Kontopidis, Vice President and responsible for the implementation of programs of the Hellenic Cystic Fibrosis Association (H.C.F.A.), after thanking for the contribution of this Conference to the goals of the Greek Cystic Fibrosis community, committed himself to the implementation of the programs already underway, such as the European registration of the Cismanoglion and St. Sophia, the home-based specialized physiotherapy programme in Athens and Thessaloniki and the continuation of the link between Sismanoglio and Southampton by sending Greek physiotherapists in the first phase.

As it seems that the Greek Cystic Fibrosis community is making an effort to harmonize with the European guidelines in terms of hospitalization standards, with the specialization of Greek doctors and health scientists and with information through conferences and collaborations with health scientists of the European community. Perhaps most important of all, the organization and continuous effort of the patients themselves, while now the introduction of new treatments targeting the cause of the disease is starting to become a reality!

The appointment has been renewed

For Saturday, November 22, 2014, where the established Workshop will be held in Athens with a similar theme and participation of the Greek Cystic Fibrosis specialists, health scientists and foreign speakers, in the framework of the European Cystic Fibrosis Week 2014.