Opening ceremony of the 38th European Cystic Fibrosis Conference 2015

The 38th European Cystic Fibrosis Conference 2015 has been completed

held in Brussels from 13 to 15 June, as every year, with more than 2,200 cystic fibrosis experts from 50 countries around the world. It is a fact that the treatment of cystic fibrosis is in a new era with constantly emerging therapies that are changing the lives of sufferers by targeting the cause of the disease. In fact, highly promising approvals of treatments for more and more mutations are expected in the near future.

Opening the conference, Professor Kris De Boeck, President of the ECFS, said: “The conference will discuss all the latest developments in medical research, the latest in new treatments and advances in the care of patients and their families, with the aim of a better future for every child and adult living with cystic fibrosis in Europe and beyond. It was stressed that with the data we have at our disposal today, i.e. early diagnosis, follow-up in organised cystic fibrosis centres and systematic treatment, the average life expectancy of patients born today will reach 50 years of life.

During the opening ceremony of the conference, the ECFS Award was presented to Dr. CarloCastellani, Professor of Clinical Genetics at the School of Medical Genetics, University of Verona, Italy, and President of the Italian Cystic Fibrosis Society. Dr. Castellani has conducted dozens of studies on epidemiology, phenotype-genotype association, diagnosis, screening and care of cystic fibrosis sufferers, and is a pioneer in screening newborns for the disease.

It is the first time in 20 years that the conference has been held in Belgium – and in the intervening period, much has changed. “Cystic fibrosis sufferers are living longer and better, in many countries more than half of the patients are now adults, and their care is now provided by specialised multidisciplinary teams,” said Karleen De Rijcke, president of the Belgian Cystic Fibrosis Patients Association. “However, cystic fibrosis remains an incurable and life-threatening disease, and the only hope for patients and their families is research into more effective treatments.”

Award to Dr Carlo Castellani by the president of the scientific community of the European Cystic Fibrosis Society (ECFS) Dr. K. De Boeck.

New treatments at the end of July

Where the approval of the combination of Lumacaftor and Ivacaftor for homozygous patients with ΔF508 mutation targeting the cause of the disease is expected, while in September it may be introduced in our country through the FDA. The improvements in FEV1% respiratory function of the above combination in patients enrolled in the study were as high as 4% after 48 weeks of treatment and had a significant reduction in pulmonary exacerbations and improvement in body mass index (BMI). While KALYDEKO improved up to 20% of FEV1% the improvement in quality of life of the above combinations is significant while research continues on the ”grandchildren” of the above combinations which are expected to have greater improvement. Our efforts are focused on getting our country to participate in clinical trials for heterozygotes ΔF 508, which is the majority of our patients, some time before it comes to market i.e. as approval is expected after 2017.

The results of the studies conducted in recent years on gene therapy in respiratory function of patients were also encouraging, as presented by Professor EricAlton. For the first time after many years of studies, it appears that gene therapy is very close to clinical practice, either alone , or in combination with other newer drugs that have been tested in recent years.

Statements by the Deputy Mayor – at Brussels City Hall at a meeting of the Cystic Fibrosis community with European stakeholders

Meeting between European and political stakeholders with the European Cystic Fibrosis community at Brussels City Hall

It took place in the framework of the European scientific conference on Thursday afternoon 11/6. The deputy mayor of Brussels, MEPs, stakeholders of the disease, the president of the European ECFSociety and the European association with the representatives of the associations of the countries discussed the need for access to new treatments and the improvement of the quality of life of patients in all European countries as there are huge differences between countries. Early diagnosis with neonatal screening which has not been established in our country so far, registration of patients at European level are among the priorities of the pressures to be solved at European level, as well as support for the ever growing population of adult patients.

The President of the European Cystic Fibrosis Scientific Community (ECFS) Dr. K. De Boeck congratulates the Hellenic Cystic Fibrosis Association to D. Kontopidis (President of HCFA).

New president of the European Patients’ Association CF-Europe

Jacquelien Noordhoek by holding elections for a new board of directors on Tuesday 9/06 where the Hellenic Cystic Fibrosis Association also participated with a nomination, setting new goals for the next 3 years. He also received congratulations for the great work done by the Association in Greece and participated with the Secretary of the Association, Giannis Spinos, in various workshops among the representatives of European associations such as the introduction of clinical studies in Greece, monitoring of the European registry from the patients’ point of view, but also the creation of strategy and priorities.

Finally, we received congratulations for our successful interventions regarding the completion of the procedures for the entry of the Cystic Fibrosis Centers of Athens in the European registry, and a special training seminar for our doctors who will implement it in the near future. An important tool in the hands of both doctors and patients, in which most countries around the world participate. With our effort, the participation of our country is expanding, since apart from Northern Greece, which has been participating since 2007, the whole country will now participate.

Meeting of Greek doctors with the Recording Officer Mrs. J. Van Rens for their information and training on the European recording platform in view of the recording in the two largest cystic fibrosis units of Athens and the country, the Agia Sophia Children’s and Sismanoglio Children’s Hospitals

The participation of the Greek scientific community

and in this conference was with a speech by Mrs. Hatziagorou on “the prognosis, monitoring and treatment of cystic fibrosis lung disease in the early stages of the disease” and the presentation of 2 posters on “intravenous treatment at home: an economical, effective and desirable option for patients with CF” and “Registry of patients with CF in Northern Greece – 7 years of experience” . Furthermore, Mr. Kaditis participated with a poster on “ileus from meconium and hypothermia in CF patients”, and the young Maria Noni with an eposter on “chronic colonization by aspergillus fumigatus and the reduction of respiratory function”, as well as with an eposter on “diagnosis of allergic bronchopulmonary aspergillosis”.

”The latest developments of the 38th pan-European conference will be presented by the Greek health scientists who participated in the conference at the traditional November Workshop in Athens in the framework of the European Cystic Fibrosis Week 2015.

Presentation of the Poster of Mrs. E. Hatziagorou to the Secretary General of the Hellenic Cystic Fibrosis Association, Giannis Spinos.

Presentation of the Poster of Mrs. M. Noni.

Vertex booth, table of the birth rate of children with CF in countries worldwide – Physiotherapist Ms V. Karapatuha / Nutritionist Ms. N. Kalafati

Part of the Greek C.F. scientific community at the European Cystic Fibrosis Conference with the Hellenic C.F. Association 

The representatives of the Hellenic Cystic Fibrosis Association Giannis Spinos and Dimitris Kontopidis with the representatives of the European national Cystic Fibrosis Patient Associations participating in the European Association CF EUROPE