For one more year, the Greek delegates of healthcare professionals and patient representatives with Cystic Fibrosis, attended the 40th European Cystic Fibrosis Conference that took place in Seville, from June 7th to June 10th, with the participation of more than 2.000 healthcare professionals.
40th European Cystic Fibrosis Conference in Seville
For one more year, the Greek delegates of healthcare professionals and patient representatives with Cystic Fibrosis, attended the 40th European Cystic Fibrosis Conference that took place in Seville, from June 7th to June 10th, with the participation of more than 2.000 healthcare professionals.
“Everyone is focused on the outstanding results from the use of innovative medicines and new combinations that target various mutations. The new combination of tezacaftor and ivacaftor showed great improvement in spirometry results and the clinical picture of heterozygous ΔF 508 patients who participated in Phase 3 Clinical Trials, as presented by VERTEX.
We’re anxiously awaiting for results of “next generation” – as they’re called – combinations, which target all four series of mutations, effectively covering the majority of patients. Our main priority is to participate in these clinical trials as a country,” said Dimitris Kontopidis, the President of the Hellenic Cystic Fibrosis Association (HCFA).
The Greek Delegates, Mr. Konstantinos Stardelis, Mr. Dimitris Kontopidis and Mr. Stavros Giannakoulakos.
The Greek Delegates for patients with CF
attended the Scientific Conference from Day 1, participating in the Annual Assembly of the European Cystic Fibrosis Patients’ Association – CF Europe, once again acting as representatives for Greek patients. The President of the Association, Dimitris Kontopidis and the Administrative Manager, Konstantinos Stardelis, informed the European Delegates about the latest news regarding CF in our country, HCFA’s future projects, and reached out to create a connection with associations from various countries.
During a number of workshops that took place along with delegates from other European countries, the discussions were focused on commonly shared issues, such as reimbursement for medicinal products, clinical trials and funding, exchanging information and good practices, in order to promote the patients’ goals through collaboration.
The Meeting of the Patient Registry Social Media Working Group with Mr. Dimitris Kontopidis, Mr. Andreas Jung, Ms. Alice Fox and Ms. Rebecca Cosgriff.
ECFS PATIENT REGISTRY – WORKING GROUP
Mr. Dimitris Kontopidis participated in the meeting of the ECFS patient registry social media working group, working with Rebecca Cosgriff (Registry Lead, CF Trust, UK), Andreas Jung (Dr. Med., Universitäts-Kinderspital Zürich) and AliceFox, (ECFSTeam, Italy) to create a platform for disseminating information regarding the ECFS Patient Registry.
Throughout the Conference, Mr. Dimitris Kontopidis and Mr. Konstantinos Stardelis participated in specialised seminars (Meet the Expert) on Transplantations, Exercise and Bone Health and Writing Grant Applications. Additionally, they held meetings with the scientific delegates of specialised CF centres from Southampton, UK and three CF centres from Belgum, regarding the “Exercise and Physiotherapy” Conference that HCFA is organising on September 16th, with the participation of foreign speakers. Lastly, the Greek Delegates received valuable information from all commercial stands in the conference hall, regarding the latest news in medical equipment and medicinal products for the disease.
Physiotherapist Mr. Stavros Giannakoulakos with the Certificate of Attendance for the 2-day Physiotherapy Workshop.
Physiotherapy Workshop
Apart from the patient representatives, the Greek team also included physiotherapist Stavros Giannakoulakos, scientific associate of the Aristotle University of Thessaloniki, who attended a 2-day workshop titled “Exercise in CF: From Evaluation to Prescription”.
“The workshop’s first goal was to make it perfectly understood, that a complete assessment of the patient’s functional ability and endurance is extremely important. It included presentations on the latest functional ability tests as well as an analysis for the various stress test protocols used. We had a long discussion on the methods we physiotherapists can use to convince children to participate in the personalised exercising programmes, with the sole aim of providing them with the outmost benefits they can receive from exercising. In the last and most important part of the Workshop, the focus shifted to the basic principles of exercising. Specialists noted that exercising programmes have to include strength, endurance and balance exercises. The quantity of each varies according to the individual child’s specific needs. Once again, I feel reassured about the techniques used in Greece, as they perfectly match the ones used in many of Europe’s largest centres. That fact alone provides us with the strength and will to continue moving forward, step-by-step, to ensure better results, as, “Each Breath, a Step Closer to our Dreams!”
Awardee of the 2017 Patient Advocacy Award, Ms. Georgiana Nitu.
Patient Advocacy Award
The President of ECFS, Ms. Kris De Boeck honoured Ms. Georgiana Nitu, from the Romanian CF Association, with the 2017 Patient Advocacy Award, for her outstanding effort and support for patients with CF in her country, showing the absolute need for an effective advocacy strategy for patients.
The Conference
Throughout the Conference, the main subject of interest was the introduction of innovative medicines, specialised treatment for the symptoms of Cystic Fibrosis, as well as the importance of exercising, physiotherapy, nutrition and psychological support.
Dr. Elpida Chatziagorou’s Presentation Titled “Is There Cardiac Autonomic Dysfunction Among Patients with Cystic Fibrosis?”.
The Greek Scientific Community
Ms. Elpida Chatziagorou, Pulmonologist from the CF Unit of the Ippokration Hospital of Thessaloniki led a workshop regarding Cardiac Autonomic Dysfunction Among Patients with Cystic Fibrosis, and submitted an e-Poster titled “Home Visits vs. Telephone Monitoring Among Patients with Cystic Fibrosis: Which is Superior?”
Dr. Athanasios Kaditis, Professor of Pediatric Pulmonology in the “Aghia Sofia” Children’s Hospital of Athens, also submitted a poster, titled “Efficacy of Intravenous Pulse Methylpredisolone Treatment Versus Continuous Systemic Corticosteroids for ABPA in Children with Cystic Fibrosis”.
President of the European Cystic Fibrosis Association, Jacquelien Noordhoek, during the meetings between delegates of Cystic Fibrosis Associations from different countries.
Mr. Dimitris Kontopidis and Mr. Stavros Giannakoulakos with the Physiotherapy and Exercise Team of the Southampton CF Centre.
Mr. Dimitris Kontopidis and Mr. Stavros Giannakoulakos with the Physiotherapy and Exercise Delegates from two CF Centres in Belgium.
Mr. Dimitris Kontopidis, Mr. Konstantinos Stardelis and Mr. Stavros Giannakoulakos Meeting with the Head of the Southampton CF Centre, Ms. Mary Carroll.
Mr. Dimitris Kontopidis and Mr. Stavros Giannakoulakos Testing and Receiving Information Regarding New Medical Devices for Cystic Fibrosis.
