Dear friends,
We welcome you to the Panhellenic Cystic Fibrosis Conference 2024, entitled “Discovering the Path to Unlimited Breath”, a unique opportunity to learn about the most common inherited disease and lung transplantation.
At this year’s conference we are once again focusing on our vision: to create a world where every Cystic Fibrosis patient can breathe freely. Through information, innovation and solidarity, we are paving the way for “Breathless Breath”, not only as a symbol of hope, but also as a goal we can achieve together.
We are confident that you will find the conference interesting and rich in knowledge, inspiration and opportunities for meaningful and valid information. Come and join us on a path full of new perspectives and solutions for Cystic Fibrosis and join usto achieve the vision of “Breathless Breath” together.
Yours sincerely,
The Board of Directors
The Conference
The Panhellenic Cystic Fibrosis Association organized the Panhellenic Conference “Discovering the Path to Unlimited Breath“, in the framework of the European Cystic Fibrosis Week (18-24 November), under the auspices of the Hellenic Transplantation Organisation, the Hellenic Lung Society, the Hellenic Lung Association, the Hellenic Paediatric Lung Society, EURORDIS-Rare Diseases Europe, CF Europe and the Greek Patients’ Association.
- The Stanley Hotel, Karaiskaki Square, Odysseos 1, Athens (Google Maps)
- Sunday, 1 December 2024
- Start time: 10:30 am
The conference was open to patients, caregivers, health professionals, students, teachers, relatives, friends and the general public with FREE ADMISSION. It was broadcast live via Zoom in Greek and English.
More than 40 speakers, renowned scientists and health professionals, shared with us information and informed us about:
– prenatal screening of Cystic Fibrosis in Greece
– early diagnosis and preventive screening of newborns
– treatment options and new drugs for patients
– the latest developments in Cystic Fibrosis and lung transplantation
– holistic care and management of the disease before and after transplantation
– psychosocial support programs for Cystic Fibrosis
– patients with C.I. patients and caregivers shared personal stories of living with Cystic Fibrosis before and after lung transplantation
WHO PARTICIPATED?
- Patients & parents: They were informed about the latest developments in the diagnosis and treatment of CVI and lung transplantation and talked with specialized scientists from all the CVI centers in Greece.
- Health professionals: They were informed about new therapeutic approaches and gained a valuable tool for patient care.
- Representatives of stakeholders & patients: They identified patients’ needs and actively contributed to improving their care.
- Teachers: Learned how to support students with Cystic Fibrosis and their families.
- Students: Enriched their knowledge and inspired their careers through talks by leading experts.
- Relatives & friends: They better understood the challenges of their loved ones by supporting them substantially.
- Wide audience: They helped raise awareness and were informed about disease prevention, early diagnosis and the latest scientific developments.
All participants received the new book “Feeding Children with Cystic Fibrosis” for free by pediatrician Anastasia Gambetta. A valuable handbook for patients, health professionals, educators and the general public that aims to fill the gap in information about Cystic Fibrosis and the importance of nutrition in the disease. The book was edited by. Hope Hadjiagorou, Michael Chourdaki, Liana Poulia.
The conclusions of the conference
The Panhellenic Cystic Fibrosis Congress 2024 highlighted the power of the community and opened new paths towards “Breathless Breath”! Read the conclusions and see the photos that capture its most powerful moments here.
Program
10:30 – 12:00 (EET) Opening – Greetings
- Lillian Venetia Vildiridis, Secretary General for Health Services
- Evangelos Manolopoulos, President of the National Medicines Agency (NDA)
- Theano Karpodini, Administrator of EOPYY
- Hara Kani, Head of the EOPYY Pharmaceuticals Division
- Virginie Bros Facer, CEO Eurordis-Rare Diseases Europe
- Hilde de Keyser, CEO Cystic Fibrosis Europe
- Prof. Lutz Nährlich, Representative of the European Cystic Fibrosis Registry ECFSPR
- Memi Tsekura, Vice President of the Greek Patients’ Association
- Antonis Papadimitriou, President of the Onassis Foundation
- Georgios Papatheodoridis, President of the National Transplantation Organisation
- Ioannis Boletis, President of the Onassis Heart Surgery Centre
- Christina Kanaka-Gantenbein, President of the Institute of Child Health
- Maria Tzeti, Head of Cystic Fibrosis, Laboratory of Medical Genetics, University of Athens, Greece
- Dimitris Zographopoulos, Data Protection Officer, Ministry of Health
- Panagiota Mitrou, Head of the Department of Therapeutic Protocols and Registries of the Ministry of Health
- Ioannis Chanakas, Scientific Officer of the Ministry of Health Hospital at Home
- Charalambos Moschos, Representative of the Hellenic Lung Society
- Stamatoula Chikrika, President of the Hellenic Lung Association
12:00 – 13:30 (EET) Cystic fibrosis in children
“The new face of Cystic Fibrosis: hopes and concerns“
Chatziagorou Elpida, Professor of Pediatrics – Pediatric Pediatric Pulmonology, University of Thessaloniki, Head of the Cystic Fibrosis Unit, General Hospital “Hippocrates”
“Modern treatment & holistic care of children with CF“
Petrochilou Argyri, Pediatrician – Pediatric Pulmonologist, Attending Nurse A’, Cystic Fibrosis Department, Aghia Sophia Children’s Hospital
“New approaches in the management of complications in the digestive system of patients“
Fotoulaki Maria, Professor of Pediatric Gastroenterology, Aristotle University of Thessaloniki, Director of Pediatric Gastroenterology, Hepatology and Nutrition, General Hospital “G. Papageorgiou”
“Transition of adolescents with C.I. from pediatrics to adult care: new data“
Paraskakis Emmanuel, President of the Hellenic Society of Pediatric Pulmonology, Ann. Professor of Pediatrics, University of Crete, Head of the Cystic Fibrosis Clinic for Children, University General Hospital of Heraklion, Crete (PEPAGNI)
“Nutritional interventions in patients with pancreatic insufficiency“
Katsagoni Christina, MSc, PhD, Clinical Dietitian-Dietitian, Aghia Sophia Children’s Hospital, Scientific Associate of Harokopio University
“Newest data in the nutrition of children with Cystic Fibrosis“
Gambetta Anastasia, MD, PhD, MSc, Pediatrician, Doctor of Medicine, MSc – Applied Nutrition and Health Promotion
Public questions
13:30 – 14:00 (EET) Break (light lunch)
14:00 – 15:30 (EET) Cystic fibrosis in adults & Lung Transplantation
“New challenges in Cystic Fibrosis“
Diamantea Filia, Pulmonologist, Director of the NHS, Scientific Head of the Adult Cystic Fibrosis Unit, Sismanoglio General Hospital
“Administration of the triple combination of elexacaftor/tezacaftor/ivacaftor in patients with CF without DF508“
Manika Katerina Manika, Associate Professor of Pulmonology-Physiology, Aristotle University of Thessaloniki, Adult Cystic Fibrosis Center, Pulmonology Clinic of Aristotle University of Thessaloniki, General Hospital “G. Papanikolaou”
“The experience of managing adult patients with Cystic Fibrosis“
Pitsidianakis Georgios, Director of the NHS Pulmonology, Head of the Adult Cystic Fibrosis Clinic, University General Hospital of Heraklion, Crete (PEPAGNI)
“Lung Transplantation: where we are in 2024“
Tsagaris Hercules, Professor of Pulmonology – Intensive Care, Director of the Attikon Intensive Care Clinic, Scientific Director of the Lung Transplantation Center of the Onaion Cardiac Surgery Center
“Postoperative course of transplanted patients ”
Theodoropoulos Fotis, Attending Lung Surgeon, Onassis Heart Surgery Center
“A 2nd chance at life: The experience of lung transplantation through the eyes of a patient“
Voulgaridou Agorasti, Cystic Fibrosis transplant patient
Public questions
15:30 – 16:00 (EET) Break (coffee)
16:00 – 17:00 (EET) 41 years of the Association – Transforming life with C.I.
“Panhellenic Cystic Fibrosis Association 1983-2024: Paving the way for Unlimited Breath“
Spinou Anna, President of the Panhellenic Cystic Fibrosis Association, Member of the National Cystic Fibrosis Registry Working Group, Member of the Board of Directors of Eurordis- Rare Diseases Europe, European Patients’ Academy (EUPATI) fellow
“Group online cognitive behavioral psychotherapy program at the Panhellenic Cystic Fibrosis Association“
Rakitzi Stavroula, Dr., Dipl.-Psychologist Clinical psychologist with competence in Cognitive Behavioral Psychotherapy, Group Psychotherapy Program Manager of the Panhellenic Cystic Fibrosis Association
“Helpline for C.I. Unlimited Breath: A telephone helpline for everyone“
AtsavéEleni, Psychologist, MSc Medical School “Health Education and Health Promotion”, Helpline Project Manager “Unlimited Breath” of the Panhellenic Cystic Fibrosis Association
Saltouridou Eleni, Social Worker, Helpline Project Manager “Unlimited Breath” of the Panhellenic Cystic Fibrosis Association
“Life with Cystic Fibrosis: stories of strength from patients & caregivers”
Katsanou Vivi, Bramis Christos, Koumakis George, Tsentidou Marilena, Psyllas Eftichia, Bourani-Livathinu Eva.
Free distribution of the new book “Nutrition for Children with Cystic Fibrosis”
Speakers (in order)
Vildiridis Lillian Venetia, Secretary General of Health Services, Ministry of Health
Evangelos Manolopoulos, President of the National Medicines Agency (NDA), Professor of Pharmacology, Faculty of Medicine, Democritus University of Thrace
Karpodini Theano, Director of the National Health Services Organization (EOPYY)
Kani Hara, Pharmacist, Head of the Pharmacy Department of the National Health Services Organization (EOPYY)
Virginie Bros Facer, CEO Eurordis-Rare Diseases Europe
Hilde de Keyser, CEO Cystic Fibrosis Europe
Lutz Nährlich, Professor of General Pediatrics, Pediatric Allergy, Pediatric Pulmonology & Cystic Fibrosis, Director University Hospital Gießen and Marburg, Germany, Member of the Executive Committee of the European Cystic Fibrosis Registry ECFSPR
Tsekura Memi, Second Vice President of the Greek Patients’ Association
Antonis Papadimitriou, President of the Onassis Foundation
Papatheodoridis Georgios, President of the National Transplantation Organization, Professor of Medicine, Director of the University Gastroenterology Clinic and Director of the Liver Transplantation Unit of the “LIKKO” General Hospital
Boletis Ioannis, President of Onassis Heart Surgery Center, Professor of Pathology-Nephrology, School of Medicine, University of Athens, Greece
Kanaka-Gantenbein Christina, President of the Institute of Child Health, Professor of Pediatrics-Pediatric Endocrinology, Director of the 1st Pediatric Clinic and Research Laboratory, Endo-ERN Aghia Sophia Children’s Hospital representative, Member of the National Committee for Rare Diseases, Scientific Head of the Expertise Centre for Rare Endocrine Diseases in Children
Tzeti Maria, PhD, Professor of Genetics, Laboratory of Medical Genetics, School of Medicine, Hellenic Academy of Pediatrics, Aghia Sophia Children’s Hospital
Dimitris Zographopoulos, Data Protection Officer (DPO), Ministry of Health
Mitrou Panagiota, Head of the Department of Therapeutic Protocols and Registers of the Ministry of Health
Tsanakas Ioannis, Coordinator of the National Cystic Fibrosis Registry Working Group, Scientific, Head of the Working Group of the Ministry of Health of the Hospital at Home program, Professor Emeritus of Pediatrics and Pediatric Pulmonology of the Aristotle University of Thessaloniki.
Haralambos Moschos, Member of the Board of Directors of the Hellenic Lung Society (HPS), Pulmonologist – Tuberculologist, Attending Physician of the Anti-Tuberculosis Department – Unit of Resistant Tuberculosis, General Hospital Sotiria
Stamatoula Tsikrika, President of the Hellenic Association of Pulmonologists (EPNEL), Pulmonologist, ICU, General Hospital Sotiria
Hatziagorou Elpida, Professor of Pediatrics – Pediatric Pediatric Pulmonology, University of Thessaloniki, Head of the Cystic Fibrosis Unit, General Hospital “Hippocrates”
Petrochilou Argyri, Pediatrician – Pediatric Pulmonologist, Attending Nurse A’, Cystic Fibrosis Department, Aghia Sophia Children’s Hospital
Fotoulaki Maria, Professor of Pediatric Gastroenterology, Aristotle University of Thessaloniki, Director of Pediatric Gastroenterology, Hepatology and Nutrition, General Hospital “G. Papageorgiou”
Emmanuel Paraskakis, President of the Hellenic Paediatric Pulmonology Society, Ann. Professor of Pediatrics, University of Crete, Head of the Cystic Fibrosis Clinic for Children, University General Hospital of Heraklion, Crete (PEPAGNI)
Katsagoni Christina, MSc, PhD, Clinical Dietitian-Dietitian, Aghia Sophia Children’s Hospital, Scientific Associate of Harokopio University
Gambeta Anastasia, MD, PhD, MSc, Pediatrician, Doctor of Medicine of the Aristotle University of Thessaloniki, MSc – Applied Nutrition and Health Promotion
Diamantea Filia, Pulmonologist, Director of the NHS, Scientific Head of the Cystic Fibrosis Unit for Adults, Sismanoglio General Hospital
Manika Katerina Manika, Associate Professor of Pulmonology-Tuberculology, University of Thessaloniki, Adult Cystic Fibrosis Centre, Pulmonology Clinic of the University of Thessaloniki, General Hospital “G. Papanikolaou”
Pitsidianakis George, Director of the NHS Pulmonology, Head of the Adult Cystic Fibrosis Clinic, University General Hospital of Heraklion, Crete (PEPAGNI)
Tsagaris Hercules, Professor of Pulmonology – Intensive Care at the University of Athens, Director of the Attikon Intensive Care Clinic, Scientific Director of the Lung Transplantation Center of the Onassis Cardiosurgical Center
Theodoropoulos Fotis, Attending Lung Surgeon, Onassis Heart Surgery Centre
Spinou Anna, President of the Panhellenic Cystic Fibrosis Association, Member of the Working Group of the National Cystic Fibrosis Registry, Member of the Board of Directors of the European Organisation Eurordis- Rare Diseases Europe, European Patients’ Academy (EUPATI) fellow
Konstantina Giannaki, Vice President of the Panhellenic Cystic Fibrosis Association
Rakitzi Stavroula, Dr., Dipl.-Psychologist Clinical psychologist with competence in Cognitive Behavioral Psychotherapy, Head of the group psychotherapy program of the Panhellenic Cystic Fibrosis Association
Atsave Eleni, Psychologist, MSc Medical School “Health Education and Health Promotion”, Head of the Helpline program “Breathless Breath” of the Panhellenic Cystic Fibrosis Association
Eleni Saltouridou, Social Worker, Helpline Project Manager “Unlimited Breath” of the Panhellenic Cystic Fibrosis Association
