The team of HCFA Anna Spinou (President), Irene Katsini (Vice President), Konstantina Giannaki (General Secretary) represented once more this year the Cystic Fibrosis patients of Greece at the annual meeting of CF Europe and participated in the ECFS conference, which took place from 6 to 10 June 2023 in Vienna, Austria.
– ANNUAL MEETING OF CF Europe
During the annual meeting of CF Europe, which this year celebrates its 20th anniversary, the HCFA’s representatives discussed with the representatives of other CF associations in Europe. They exchanged experiences, opinions and good practices, strengthening the cooperation relations between Greece and other European countries. They also participated in the 2 workshops about the community building and collaboration with stakeholders.
During the meetings, it was pointed the need of development of collaboration between CF Europe and ECFS and the need for equal access to innovative treatments for eligible CF in all countries. Furthermore, the problems pf CF patients living in countries were presented, such as the complete lack of special care and access to basic treatments for CF.
A particularly touching moment was when the representatives of the European associations said goodbye to the President of CF Europe, Jacquelien Noordhoek, and they thanked her for her offer to CF community. The atmosphere was also highly charged when Mrs Noordhoek announced the winner of the Patient Advocate award 2023, the representative of the CF Association of Ukraine. Larysa Voloshyna thanked all the European CF associations for the support and their help to Ukrainian CF patients during the war.
– ECFS CONFERENCE
The representatives of our Association participated in the ECFS conference held at the Austria Center.
They held a meeting with Rebecca Hunt, Vice President, Patient and Community Engagement, Vertex Pharmaceuticals, discussing the issues related to CF patients in Greece.
At the same time, they had a conversation with the President of the ECFS, Dr Isabelle Fajac, about the need for patient associations to work together with scientists.
The programme of ECFS conference included numerous presentations and workshops on a variety of topics about CF. This year’s conference presented a large amount of data on the long-term impact of innovative CFTR Modulators therapies. A variety of studies were presented based on data on 16,000 CF patients from the US CFFPR Registry and on almost 3,000 patients from the German CF Registry, as well as based on real world data from CF patients. Based on the results of the studies, administration of the triple combination therapy improved patients’ pulmonary function and reduced pulmonary exacerbations by 79% in the US and 83% in Germany overall compared to baseline before treatment. At the same time the death rate was 72% lower in the US and 82% lower in Germany, the lung transplantation rate was 85% lower in the US and 100% lower in Germany, compared with 2019 before treatment for the populations of patients with CF in both countries.
There were also presented the impressive results of the four-year open-label study on the efficacy of triple combination in patients with CF aged 12 years and older, showing for the first time that the treatment did not lead to a decline in lung function over four years.
Particular emphasis was placed on the new challenges that CF patients face since the disease is changing. Emphasis was also placed on the need for new medical specialties to support patients, the need to protect the mental health of patients, issues about fertility and pregnancy of female patients and the new challenges of maternity-paternity.
There were also presented the changes in nutrition, new trends in physiotherapy and exercise, the latest news on gene therapy and bacteriophage therapy, changes in the epidemiology of the disease, and the latest data on the criteria for referral to lung transplantation for CF patients receiving CFTR Modulators.
The Greek scientific community of our doctors was strongly involved in the in the comference and there were also scientific presentations with very interesting posters participated from Greece from the CF adult Centers in Sismanoglio and Papanikolaou in Thessaloniki, as well as from the Pediatric CF Centers at the Children’s Hospital- Ag. Sophia and Ippokration Hospital in Thessaloniki.