The Panhellenic Cystic Fibrosis Association remains firmly committed to representing the voice of patients and improving the quality of care in C.I. Centres throughout Greece.
In response to patient reports received, it carried out a series of important institutional interventions in the past months to strengthen the C.I. Centre at the Sismanoglio General Hospital, the largest specialised adult Cystic Fibrosis Centre nationwide.
The focus of the Association’s interventions is to meet the needs of patients. The Association calls for the support of the only specialized Cystic Fibrosis Center, which covers on an organized basis more than 300 adult patients from all over Attica, Central Greece and other regions of the country. Currently, their care is provided by a single specialist pulmonologist, at a time when European standards of care recommend a ratio of 1 pulmonologist per 50 patients.
In Greece there are only two Cystic Fibrosis Centres for adults: one at Sismanoglio for over 300 patients and the second at the General Hospital Papanikolaou in Thessaloniki, which covers about 70-80 patients, mainly from Northern Greece. There is therefore no alternative treatment option for adult patients in our country.
As innovative treatments increase the survival rate of patients, it is estimated that in the next few years, around 75-80% of Cystic Fibrosis patients will be adults. This creates increasing needs that require strengthening of adult centres and redesign of care.
Targeted Interventions of the Association
The Association has sent institutional letters to the Ministry of Health, the Administration of Sismanoglio, the Ministry of Health and all relevant bodies, asking for the immediate announcement of a second permanent position of a pneumonologist. It has also called for nursing staffing to be based on the specialised needs of patients and for the unit to operate in accordance with international standards of specialised care.
Moreover, the Hellenic Lung Society (HPS) has actively supported from the very first moment the Association’s request for the appointment of a second lung specialist.
Institutional Meetings & Collaboration with Hospital Administration and Services
Since the beginning of the year the representatives of our Association have held a series of important meetings at the General Hospital of Sismanoglio.
January 27, 2025 – Meeting with Pharmacy Director: The President of the Association Anna Spinou and Vice President Konstantina Giannaki met with the Pharmacy Manager Ms. Despina Makridaki . We asked for the contribution of PEFNI and the hospital pharmacists to the shortages of pharmaceutical preparations faced by our patients. Ms. Makridaki responded from the very first moment to the patients’ request, serving at the pharmacy of Sismanoglio patients with Cystic Fibrosis from all over Greece, who face serious supply shortages of pancreatic and liver preparations from private pharmacies.
January 27, 2025 – Meeting with a dietician of Sismanoglou: The President of the Association Anna Spinouand the Vice PresidentConstantina Giannaki The Association’s President, Anna Anna and the President of the Association, Ms Roula Tzouganato, met with the new Specialist Dietician of Sismanoglio, Ms Roula Tzouganato, where they discussed the launch of the outpatient clinic for Cystic Fibrosis & transplant patients.
April 24, 2025 – Meeting with Director of Respiratory Medicine B: The President of the Anna Spinou Association met with the Director of the 2nd Pulmonology Clinic of Sismanoglio , Mr. They discussed the immediate need to strengthen the C.I. Center with pulmonologists.
2 May 2025 – Meeting with Governor: The President of the Association Anna Spinou and the former Vice President Irini Katsini, during their hospitalization, met with the new Administrator of Sismanoglio, Mrs. Zoe Rakopoulou. They discussed the urgent need to strengthen the Unit with a second specialized pulmonologist, as well as the institutional upgrading of its operation according to international standards.
Ms. Rakopoulou listened attentively to the patients’ requests and pledged to actively support the C.I. Center, recognizing the importance of its work for the health and quality of life of patients with Cystic Fibrosis.
May 13, 2025 – Meeting with Director of Nursing: President Anna Spinou met with the new Director of Nursing, Ms. Adriana Kakoyannis . At the meeting she conveyed the patients’ requests for consistent and specialized nursing care in the C.I. Unit, highlighting the value of continuity of care and empathy on the part of the staff.
27 May 2025 – Second meeting with Governor & Deputy Director. Commander : President Anna Spinou and the new Board Member Marilena Tsentidou met with the Governor Ms. Rakopoulou Zoe and the Deputy Governor κ. Efthymiadis Ioannis, where the progress of patients’ requests for the strengthening of the Unit’s operation and patient support was discussed.
Setting up regular monitoring of transplant patients at the C.I. Centre – In the framework of the institutional cooperation with the Head of the C.I. Centre of Cismanoglio, Mrs. Filia Diamantea, the transplants patients with Cystic Fibrosis are asked to come to at least once a year to the C.I. Centre for regular monitoring, comprehensive health assessment and monitoring of the complications of the disease in gastrointestinal, endocrinological etc., apart from respiratory, for which they continue to go to their transplant centre. To schedule an appointment with Ms. Diamantea, transplant patients may contact the C.I. Unit Secretary at 2132058408.
Launch of a dietetic clinic for Cystic Fibrosis – Following the meeting earlier this year of President Anna Spinou and Vice President Constantina Giannakis with the new specialized dietician of Sismanoglio, Mrs. Roula Tzouganato, the operation of an outpatient clinic of specialized dietary support for patients with Cystic Fibrosis and transplant patients begins. Patients can contact to schedule an appointment at 2132058432, every Wednesday, 9:00-13:00.
Start of a diabetology clinic for Cystic Fibrosis – Following the communication of President Anna Spinou with the Director of Medical Services and Head of the Diabetology Department, Mr. Tsokos Nikolaos, the operation of a specialized diabetology clinic will soon start on a specific day and time for patients with Cystic Fibrosis and transplant patients. We will keep you informed of any news.
Speech by the President of the Anna Spinou Association at the Cystic Fibrosis Interclinical Course in Sismanoglio
On 27 May 2025, our Association’s President, Anna Spinou, participated as a speaker in the hospital’s inter-clinical course on “Cystic Fibrosis: multisystemic manifestations and newer developments”. The course was organized by the Education Committee of the Scientific Council of the Cismanoglyphic Hospital in the hospital’s auditorium.
Speeches were given by renowned physicians from various specialties, presenting multifaceted approaches to Cystic Fibrosis, from Pulmonology, ENT, Gastroenterology, Pathology, to Physiotherapy and Nursing. The course was also attended by the new Board Member of the Association, Marilena Tsentidou.
In her speech, our President conveyed the voice of the patients, spoke about life after the revolutionary treatment and the new challenges, but also about the interventions of the Association that have changed the lives of patients over the last 42 years. She stressed the need for continuous specialized care and for cooperation between all health professionals.
He also thanked the Head Physician of the C.I. Unit, Mrs. Filia Diamantea, as well as the staff of the Unit and the hospital for their dedication to the patients with C.I. He expressed special thanks to the Director of the Pharmacy, Mrs.Despina Makridaki, for her valuable support to patients with Cystic Fibrosis throughout Greece regarding the shortage of medicines.
Conclusions
As the institutional representative of patients with Cystic Fibrosis throughout Greece, the Association is in constant communication and cooperation with the Ministry of Health and the hospital administration, seeking solutions for the strengthening and survival of the Centre. A Center that is the only alternative for specialized care and quality of life for hundreds of patients throughout Greece. The Ministry of Health and the hospital administration are committed to strengthening the Centre.
The support of the Cystic Fibrosis Centre for adults at Sismanoglio is not just a request. It is necessary to ensure the life, health and quality of care of hundreds of patients who have no other choice of care. Patients demand specialized, stable and humane care.
We ask our members from all over Greece to continue to send us their experiences and reports on care issues or any other issue of concern to the Association’s email: helpline@cysticfibrosis.gr Your written reports are the key to informed interventions by the Association.
We are in constant communication and will inform you of any new developments.
The Panhellenic Cystic Fibrosis Association continues to carry the voice of patients and to demand the solutions needed for a decent and quality care. We continue to firmly support all Cystic Fibrosis Centers and clinics throughout Greece, defending equal access to specialized services for all patients, regardless of geographical area.
