40th European Cystic Fibrosis Congress in Seville

For one more year, the Greek delegation, with health scientists and representatives of Cystic Fibrosis patients, participated in the 40th European Cystic Fibrosis Congress held in Seville from 7 to 10 June, with the participation of more than 2,000 health scientists.

¨All our eyes are on the excellent results of the innovative drugs that every year new combinations are presented and involve different mutations. Great improvements in spirometry and clinical picture in 508 heterozygous ΔF 508 patients participating in phase 3 clinical trials had the drug combination tezacaftor -ivacaftor, presented at the VERTEX symposium. We are eagerly awaiting the results of the ¨nextgeneration¨, as they are called, combinations involving all 4 classes of mutations, covering the majority of patients. Our main priority as a country is to participate in these clinical studies,” said Dimitris Kontopidis, President of the Hellenic Cystic Fibrosis Association.

Representatives of the Hellenic Cystic Fibrosis Association at the European Congress

(Mr. Konstantinos Stardelis, Mr. Dimitris Kontopidis, Mr. Stavros Giannakoulakos)

The Greek delegation of the representatives of patients with C.F

attended from the 1st day of the Scientific Conference, participating in the annual meeting of the European Cystic Fibrosis Patients Association – CFEUROPE, representing once again the Greek patients. The President of the Hellenic Cystic Fibrosis Association Dimitris Kontopidis and the Executive Director Konstantinos Stardelis informed the European community about the developments in the field of Cystic Fibrosis in our country, the planned actions of the Association and developed the basis for cooperation with organizations from several countries. In the various workshops with the representatives from other countries, common problems were discussed, such as drug reimbursement, clinical studies and finding resources, with the necessary exchanges of information and know-how, in order to achieve more effective intervention through collaborations.

Meeting of the representative of the Hellenic Cystic Fibrosis Association (Mr. Dimitris Kontopidis) with the Organizing Committee for the Registration of Patients (Mr. Andreas Jung, Ms. Alice Fox, Ms. Rebecca Cosgriff)

ECFS PATIENT REGISTRY – WORKING GROUP

Mr. Dimitris Kontopidis participated in the meeting of the ECFS Patient Registry Information Steering Committee, presenting the committee’s action plan for the coming year, together with Rebecca Cosgriff (Registry Lead, CF Trust, UK), AndreasJung (Dr. Med., Universitäts-Kinderspital Zürich) and AliceFox, (ECFSTeam, Italy).

During the days of the conference, representatives of the Association participated in specialised seminars regarding Transplantation, Exercise and Fundraising. At the same time, meetings were held with the interdisciplinary teams of the specialized centers of England from Southampton, as well as three centers for Cystic Fibrosis from Belgium, regarding the organization of the “Exercise and Physiotherapy” Conference to be held in our country on September 16, with the participation of international speakers. Finally, the Greek delegation was informed from each stand about the latest developments in medical equipment and drugs for the disease.

Physiotherapist Mr. Stavros Giannakoulakos with his Certificate of Participation in the Two-Day Physiotherapy Workshop.

Physiotherapy Workshop

In the Greek delegation, apart from the patient representatives, participated the physiotherapist Stavros Giannakoulakos, scientific associate of the Aristotle University of Thessaloniki, who attended a two-day workshop on: “Exercise in Cystic Fibrosis: from assessment to prescription”.

“The first objective of the workshop was to make it absolutely clear how important it is to conduct a complete assessment of functional capacity and exercise tolerance. The latest modern functional capacity assessment tests were presented and the various protocols for the exercise stress test, the pinnacle of all, were discussed. There was a great discussion around how we as physiotherapists will convince our child patients to participate in the individualized exercise programs, with the goal of course to receive the maximum benefits from exercise. In the last and key part of the seminar, a lot of attention was given to the basic principles of exercise programmes. The experts stressed that exercise programmes should include strength, endurance and balance exercises. The amount of exercises, however, varies according to the deficits of each child. Once again, I feel confident in the techniques applied in Greece as they are identical to those applied in major centres in Europe. This fact gives us the strength to continue step by step for the best result. After all, every breath, one step closer to our dreams!”

The winner of the 2017 Patient Representation Award, Ms. Georgiana Nitu.

Patient Representation Award

ECFS President Kris De Boeck awarded Georgiana Nitu, from the C.F. Association of Romania, for her outstanding efforts and support for C.F. patients in her country, highlighting the need for effective patient representation.

The Conference

During the Congress, there was a strong emphasis on innovative treatments, specific treatment of the symptoms of the disease, and the importance of physiotherapy and exercise to improve patients’ lives.

The conference programme included numerous presentations and workshops on various topics related to medication, medical care, physiotherapy, exercise, nutrition and psychology.

The Speech of Ms. Elpida Hatziagorou regarding “Autonomic Heart Failure in Patients with Cystic Fibrosis”.

The Greek Scientific Community

Mrs. Elpida Hadjiagorou, Pulmonologist from the Cystic Fibrosis Department of the Hippocratic Hospital of Thessaloniki, participated by conducting a workshop on “Autonomous Heart Failure in Patients with Cystic Fibrosis”, as well as presenting an e-Poster on “Home Visits and Telephone Monitoring for Patients with Cystic Fibrosis”.

Mr. Athanasios Kaditis, Assistant Professor of Pediatric Pulmonology at the School of Medicine of the University of Athens, at the 1st Pediatric Clinic of the Agia Sophia Children’s Hospital also participated with a poster entitled: “Efficacy of treatment with intravenous pulse administration of methylprednisolone versus continuous administration of systemic corticosteroids for ABPA in children with Cystic Fibrosis”.

The President of the European Cystic Fibrosis Association, Jacquelien Noordhoek, during the proceedings of the meeting of patient representatives from the Cystic Fibrosis Associations of different countries.

The Hellenic Cystic Fibrosis Association with the Physiotherapy and Exercise Representatives from two centres in Belgium.