The Panhellenic Cystic Fibrosis Association continued its consistent involvement in the most significant European developments regarding cystic fibrosis through its active participation in the proceedings of the 49th EuropeanCystic Fibrosis Conference (ECFS 2026), held from June 3 to 6, 2026, in Lisbon, Portugal,
The Association was represented by Vice President Konstantina Giannaki and Secretary General George Plalas, participating in both the scientific sessions of the conference and the parallel events organized by CF Europe, the European Federation of Cystic Fibrosis Patient Organizations.
The annual medical conference of the European Cystic Fibrosis Society (ECFS) is the largest scientific gathering on cystic fibrosis in Europe. This year , it brought together more than 1,500 healthcare professionals, researchers, and representatives of patient organizations from around the world. The conference featured presentations on the most significant scientific advances, the latest research findings, and modern approaches to the care of patients with cystic fibrosis, highlighting the disease’s transition into a new era.
Active Participation of the Association in CF Europe
Prior to the start of the medical conference, the annual meeting of CF Europe was held, the European Federation of Cystic Fibrosis Associations, in which the Panhellenic Cystic Fibrosis Association is an active member.
Representatives of the Association attended the Annual General Meeting, where the report on the previous year was presented, the European community’s strategic priorities for the coming years were discussed, and a new member was elected to the CF Europe Board of Directors.
At the same time, they participated in thematic workshops on the future of cystic fibrosis care and on communication and awareness campaigns by patient organizations, with the aim of exchanging best practices, developing more effective awareness-raising initiatives, and strengthening patient involvement in shaping European health policies.
Every year, these meetings provide an important opportunity for collaboration among patient organizations, with the shared goal of improving care, equitable access to innovative treatments, and the exchange of experiences from different healthcare systems across European countries.
A New Era for Cystic Fibrosis
The key message of this year’s medical conference was that cystic fibrosis has now entered a new era. The highly effective CFTR modulators have radically changed the natural course of the disease for thousands of people worldwide, leading to improved lung function, fewer exacerbations, longer life expectancy, and a significantly better quality of life.
New data were presented in Lisbon on the long-term effects of these therapies, on the potential to reduce the treatment burden in certain cases, as well as on the newest CFTR modulator triple combination of vanzacaftor, tezacaftor, and deutivacaftor (ALYFTREK), which is expected to become another important treatment option for many patients.
At the same time, particularly encouraging results were reported from the administration of CFTR modulators to patients at increasingly younger ages, confirming that early initiation of treatment in childhood can prevent irreversible damage to the lungs and other organs, thereby substantially altering the long-term course of the disease.
Drug Research for Patients with Rare Mutations
A significant portion of the conference was devoted to patients who remain ineligible for effective, innovative treatments due to their rare genetic mutations.
Dr. Anna Borrelli’s research attracted particular interest; she was honored with the 2026 Gerd Döring Award for her work on nonsense mutations (Class I). Preliminary research data indicate that new combinations of molecules can significantly restore the production and function of the CFTR protein in patients’ cells, offering real hope to patients who, until now, have had no effective treatment options.
The message was that research is continuing both for patients who are already benefiting from CFTR modulators and for those who are not eligible for these therapies, with the goal of providing treatment options for all patients with cystic fibrosis.
New Approaches to Patient Care
In addition to CFTR modulator therapies, significant advances were presented in new treatment strategies for managing chronic respiratory infections in patients, which remain one of the disease’s greatest challenges.
Of particular interest were studies on the use of monoclonal antibodies, bacteriophages (phage therapy), and new antimicrobial agents. There was also extensive discussion regarding infections caused by Pseudomonas aeruginosa, nontuberculous mycobacteria (NTM), and fungi.
At the same time, new telemedicine applications, at-home respiratory function monitoring, and artificial intelligence tools (Artificial Intelligence and Machine Learning) were also presented, which aim to contribute to the early detection of disease progression and to even more personalized patient care.
Modern Holistic Care for Cystic Fibrosis
Another important conclusion of the ECFS 2026 Conference was that the modern management of cystic fibrosis now extends beyond the preservation of respiratory function, as people with cystic fibrosis are living longer thanks to new treatments.
At this year’s conference, studies and presentations were given on topics related to mental health, physical therapy and exercise, nutrition, Cystic Fibrosis-Related Diabetes (CFRD), gastroenterological and liver health, colorectal cancer prevention through screening with colonoscopy, lung transplantation and long-term follow-up of transplant recipients, pregnancy and parenthood, work, social integration, and healthy aging.
Special emphasis was also placed on public health and prevention issues, such as optimizing neonatal screening, the impact of indoor and outdoor air quality, the effects of vaping, and the role of the microbiome in the progression of cystic fibrosis.
In the past, cystic fibrosis was primarily viewed as a pediatric or exclusively pulmonary disease. Today, it is recognized as a chronic condition that requires holistic, multidisciplinary, and personalized care throughout the patient’s life.
The Vice President of the Panhellenic Cystic Fibrosis Association, Konstantina Giannaki, stated:
“Our participation this year in the ECFS conference and in CF Europe’s activities was a particularly important experience and a valuable opportunity to learn firsthand about the latest scientific developments, as well as to exchange experiences with patient organizations from across Europe. The most encouraging message we bring back from Lisbon is that research continues to advance at an impressive pace for all patients, for those who are already benefiting from the innovative CFTR modulator therapies and for patients with rare mutations who are still waiting for effective treatments. Also We have observed that the international discussion is now shifting from the survival of patients with cystic fibrosis to how they can live better, a fact that further strengthens the Panhellenic Cystic Fibrosis Association’s efforts to provide comprehensive and modern care for all patients in our country.”
Greek scientific participation
Greece once again had a strong scientific presence at this year’s European Cystic Fibrosis Congress, with the participation of doctors and healthcare professionals from all Greek Cystic Fibrosis Centers, who attended the scientific sessions and presented research studies, actively contributing to the international scientific dialogue.
The consistent presence of Greek centers at European conferences reflects the high level of scientific expertise and the ongoing efforts of interdisciplinary teams to incorporate the latest developments intodaily patient care.
The Panhellenic Cystic Fibrosis Association congratulates all Greek healthcare professionals for their scientific contributions and their role in the ongoing improvement of care for patients with cysticin our country.
ECFS Awards 2026—The Importance of the European Cystic Fibrosis Registry and the Voice of Patients
This year’s ECFS European Congress once again provided an important opportunity to honor individuals who, through their scientific careers or their long-standing work as patient advocates, have made a decisive contribution to the advancement of cystic fibrosis at the European and international levels.
This year’s top ECFS Award was presented to Professor Lutz Nährlich (Justus Liebig University Giessen) in recognition of his many years of service to clinical research on cystic fibrosis and his decisive contribution to the development and evolution of the European Cystic Fibrosis Patient Registry (European Cystic Fibrosis Society Patient Registry – ECFSPR). As the Scientific Director of the Registry’s pharmacoepidemiological studies and a member of the ECFSPR Steering Group, he has made a significant contribution to the use of Registry data to evaluate new therapies and improve care for people with cystic fibrosis at the European level.
During the conference’s opening plenary session, Professor Nährlich presented the progress of the European Cystic Fibrosis Registry, highlighting its crucial role as a tool that supports research, the evaluation of treatments, and the development of evidence-based health policies for cystic fibrosis.
Professor Nährlich has been a long-standing collaborator of the Panhellenic Cystic Fibrosis Association and has repeatedly participated as a guest speaker at the Panhellenic Cystic Fibrosis Conference , informing the Greek community about the latest developments regarding European registries and their significance.
Anna Spinou, President of the Panhellenic Cystic Fibrosis Association, stated:
“The award presented to Professor Lutz Nährlich is a deeply moving and thoroughly deserved recognition of his many years of service to the European Cystic Fibrosis community. For many years now, we have had the pleasure of working closely with him, both through our Association’s long-standing contribution to the European Cystic Fibrosis Patient Registry (ECFSPR) and through his participation as a guest speaker at the annual Panhellenic Cystic Fibrosis Conference. As a patient representative on the National Cystic Fibrosis Registry Working Group, I know firsthand that registries are not merely databases. They are valuable tools that transform the experiences of thousands of people with cystic fibrosis into knowledge, which leads to better treatments, better care, and more evidence-based health policies. Professor Nährlich’s award honors not only a distinguished scientist but also the power of international collaboration among scientists, healthcare professionals, and patient organizations—which is a fundamental prerequisite for continued progress in the treatment of cystic fibrosis.”
At the same time, the 2026 Patient Advocate of the Year award was presented to Stephan Kruip from Germany, one of the most active and long-standing advocates for the European cystic fibrosis patient community. His many years of work defending patients’ rights, in promoting research, and in advocating for equal access to innovative treatments has been recognized by the European community as a significant contribution to improving the lives of people with cystic Cystic Fibrosis.
This annual award highlights the crucial role that people living with cystic fibrosis and patient organizations play in advancing research, improving care, and shaping European health policies.
The Importance of International Collaboration on Cystic Fibrosis in Greece
The Association’s participation in the 49th European Cystic Fibrosis Congress and in the annual meetings of CF Europe reaffirms the Panhellenic Cystic Fibrosis Association’s to keep pace with international developments, strengthen cooperation with the European community, and bring to Greece the knowledge and best practices that are shaping the future of care.
Science is advancing rapidly. New treatments, innovative research approaches, and an increasingly holistic approach to the care of patients with cystic fibrosis are giving rise to well-founded optimism for the future.
The Panhellenic Cystic Fibrosis Association continues to actively participate in European developments, support research, the National and European Patient Registries, and to advocate for equal access for all patients with cystic fibrosis to innovation, new treatments, and high-quality multidisciplinary care, with the goal of a life with “Unlimited Breath.”
