With international presence and active participation, the Panhellenic Cystic Fibrosis Association followed the developments and carried the voice of Greek patients to the 48th European Cystic Fibrosis Congress ECFS 2025. This is the largest scientific event on Cystic Fibrosis in Europe, bringing together every year scientists, experts and community members from all over the world.
The Greek mission
The conference was attended by representatives of the Panhellenic Cystic Fibrosis Association together with doctors and collaborators from the specialized centers of our country, highlighting the importance of close cooperation between patients and scientists.
The Greek delegation of our Association was represented by our President Anna Spinou, Vice President Konstantina Giannakis, the Secretary General George Plala and the Rev. Board Member Stella Georgaki, who represented transplant patients with Cystic Fibrosis.
Mrs Maria Davis, Head of Production Operations of EDIKA and active member of the National Cystic Fibrosis Registry working group, participated with the Greek delegation in the conference. Ms Davis with the working group and representatives of the Ministry of Health has been instrumental in the continuous improvement and development of the operation of the National Registry, supporting its interface with European databases. During the conference, he attended the specialised sessions on the European Cystic Fibrosis Patient Registry- ECFSPR, making a key contribution to the operational strengthening of our National Registry.
The ECFS scientific conference
The conference was held in Milan from 4-7 June 2025, bringing together more than 2,000 participants from 69 countries. Over 700 scientific abstracts were presented, while 67 sessions and over 50 parallel meetings were held, filled with scientific knowledge, innovative discussions and educational workshops.
Leading scientists and health professionals participated in the proceedings, presenting important developments. In particular, the most recent developments in research, treatments and clinical practice were presented. The topics covered a wide range of topics, including: CFTR modulator therapies, innovative approaches to gene and cell therapy, management of multi-drug resistant infections, psychosocial support, quality of life improvement, pregnancy and modifiers, and issues related to transplantation in Cystic Fibrosis.
Highlights included presentations of data on the new CFTR modifier Alyftrek, and the importance of reducing sweat sodium chloride levels as a key indicator of treatment efficacy. The drug has now received approval from the European Medicines Agency (EMA) and is already available in our country.
In this context, a meeting was held between the pharmaceutical company Vertex and representatives of patient associations from several European countries. From our Association participated Anna Spinou and Konstantina Giannaki, representing the Greek patient community, where they were informed about the new drug Alyftrek and the programs of free provision of CFTR modifiers in countries with limited financial resources.
Awards for important persons
During the opening ceremony of the conference, important awards were presented, highlighting both scientific excellence and the human side of Cystic Fibrosis.
The annual ECFS Award 2025 was presented to Professor Pierre-Régis Burgel from France for his long-term contribution to research and patient care, and he opened the proceedings with an inspiring keynote speech. The Gerd Döring Award 2025 was awarded to Professor Mattijs Bulcaen for his innovative work in gene repair, aiming to develop treatments for patients who until now remain outside of treatment options.
The Patient Advocate 2025 award was particularly moving for Katarina Stepankova from Slovakia, a mother of two children with Cystic Fibrosis, one of whose sons has lost his battle with the disease. In her speech, she spoke about the importance of claiming equal access to treatments, dedicating her action to the memory of her child, who is a beacon of hope and strength for her.
CF Europe Annual General Meeting
The delegation of our Association also represented Greece at the Annual General Assembly of the European Cystic Fibrosis Association CF Europe, which took place on 3-4 June, before the start of the scientific conference. During the proceedings, common strategic objectives were set to strengthen the voice of patients and to plan the future of the organisation at European level.
A special highlight was the participation in the Twinning Project Connection Workshop, on tips for the empowerment and development of patient associations. Good practices from patient associations in the Czech Republic, Albania, Armenia and Bulgaria were presented, with an impressive presentation of the Czech association by Anna Arellanesova, who described the transformation journey of the national association from a voluntary group to a professional organisation with a focus on growth, influence and sustainability.
“Fuori Tutto”: a different awareness campaign
In addition to the scientific programme, the representatives of our Association visited the art exhibition “Fuori Tutto”. A touching awareness campaign on Cystic Fibrosis implemented in the centre of Milan by the Italian Association for Cystic Fibrosis- LIFC and the Italian Society for the Study of Cystic Fibrosis- SIFC, with the support of Vertex Pharmaceuticals.
The exhibition was hosted on a main street in Milan and included 10 works of art on mirrors, inspired by the personal testimonies of Cystic Fibrosis patients – children, adults and transplant patients. Through this particular artistic approach, the audience was invited to experience the daily life and emotional reality of the patients through their own eyes.
The Panhellenic Cystic Fibrosis Association continues to actively represent the Greek community in the European events of Cystic Fibrosis through CF Europe and ECFS, reinforcing its commitment to information, international cooperation and strengthening the voice of patients, aiming for Unlimited Breath for all patients with Cystic Fibrosis.
