2025 Conference “From Diagnosis to Unlimited Breath”

2025 Conference “From Diagnosis to Unlimited Breath” mkrokos November 27, 2024

We invite you to the Panhellenic Congress of Cystic Fibrosis 2025, entitled “The Journey from Diagnosis to Unlimited Breath – Holistic Care, Lung Transplantation & Empowerment”. A single day-long meeting of scientists, health professionals, institutions, organisations, patients and caregivers, in a common space for dialogue and collaboration.

The aim is to look at the whole journey of the Cystic Fibrosis patient, from diagnosis and daily care to modern therapeutic advances and lung transplantation, and the value of organ donation.

With roundtables, expert talks, discussions, and the voice of patients and caregivers themselves, we aim to create a meaningful and humane conference. A conference that unites us around our shared vision: to make “Breathless Breath” a reality for every person with Cystic Fibrosis.

The Conference

The Conference is organized by the Panhellenic Cystic Fibrosis Association in the framework of the European Cystic Fibrosis Day, under the auspices of the Hellenic Transplantation Organisation and the Hellenic Lung Association, the Hellenic Paediatric Pulmonology Society, EURORDIS – Rare Diseases Europe, CF Europe and the Greek Patients’ Association and with the support of Vertex Pharmaceuticals – Platinum Sponsor and Specialty Therapeutics, PrintServe, PARI, Oxygenium, Micrel, AskPharma.

The conference is open to patients, caregivers, health professionals, students, educators, relatives, friends and the general public with FREE ADMISSION. It will be streamed live via Zoom.

THEMATIC UNITS

More than 60 speakers, renowned scientists, health professionals, representatives of institutions and patients, patients and caregivers will share information, data and experiences on:
– the early diagnosis, the identification of carriers of the disease, the screening of newborns, the National Registry of Cystic Fibrosis Patients and its interconnection with the European Registry
– the value of informing young couples before conception and diagnosis in adulthood
– holistic care, treatment options and new medicines for Cystic Fibrosis patients
– the latest developments in lung transplantation, the management of the disease after transplantation and the value of organ donation
– the psychosocial support programme for Cystic Fibrosis and the actions of the innovative Educational Campaign “Secret Mission: Cystic Fibrosis”
– personal stories about life with Cystic Fibrosis before and after lung transplantation from participants of the Association’s psychotherapy groups

WHO CAN PARTICIPATE?

  • Patients, transplant patients, carers: To be informed about the latest developments in the diagnosis and treatment of CVI and lung transplantation and to talk with institutions and specialized scientists from all the CVI Centers of Greece and the National Lung Transplantation Program.
  • Health professionals: To learn about new therapeutic approaches and gain valuable tools for patient care.
  • Representatives of stakeholders & patients: To highlight the needs of patients and actively contribute to improving their care.
  • Teachers: To learn about the new national Cystic Fibrosis Education Campaign and to inspire their students about Cystic Fibrosis, and to understand how they can support students with Cystic Fibrosis and their families.
  • Students: To enrich their knowledge and inspire their careers through talks by leading experts.
  • Relatives & friends: To better understand the challenges of their loved ones by supporting them in a meaningful way.
  • Wide audience: To help raise awareness and information about disease prevention, early diagnosis and the latest scientific developments.

CYSTIC FIBROSIS EDUCATION CAMPAIGN

The conference will present the actions of the innovative Cystic Fibrosis Education Campaign, which starts in December in schools across the country. All participants will receive free of charge the new 2nd edition of the book “Secret Mission: K.I.2”, which is the official tool of the campaign.

Through educational material, ebook, interactive presentations in schools and workshops for teachers, the campaign promotes awareness and sensitization for the Cystic Fibrosis, the transplantation, transplantation , organ donation and Hidden Skills that every child hides inside when faced with every difficulty that life brings.

The initiative is implemented by the Panhellenic Cystic Fibrosis Association in collaboration with the author-illustrator Liana Noezaki, under the auspices of the Hellenic Paediatric Pulmonology Society, the Hellenic Pulmonology Society and the Hellenic Transplantation Organisation (HTO) and with the support of Vertex Pharmaceuticals – Platinum Sponsor and the Hellenic American Union, Special Therapeutics, PrintServe.

Coming soon more information and material of the Educational Campaign “Secret Mission: Cystic Fibrosis” at https://secretmission.cysticfibrosis.gr

Free registration

Register for free now to secure your place at the conference!

Patients and caregivers who cannot attend the conference in person can send us their questions, anonymously or anonymously, by email: info@cysticfibrosis.gr All questions will be submitted to the physicians and other speakers during the conference.  

* A certificate of attendance will be given to the participants.

Program

10:00 – 11:30 (EET) Opening- Greetings

  • Welcome by the President of the Panhellenic Cystic Fibrosis Association Anna Spinou & Vice President Konstantina Giannakis
  • Minister for Health, Mr Adonis Georgiades
  • Secretary General of Health Services, Ministry of Health, Mrs. Vildiridis Lillian Venetia
  • Administrator of EOPYY, Ms. Karpodini Theano
  • Non-executive President EOPYY & Chairperson of the Pharmaceutical Price Negotiation Committee, Ms. Nadia Gogozotou
  • Head of the EOPYY Pharmaceuticals Division, Ms Kani Hara
  • Papakosta Konstantina, President of the Institute of Pharmaceutical Research & Research and Technology (IFT M.A.E.) *
  • President of the National Transplantation Organisation, Mr Papatheodoridis Georgios
  • President of the Onassis Cardiac Surgery Centre, Mr. Boletis Ioannis
  • Mr. Papadimitriou Antonis, President of the Onassis Foundation
  • President of the Hellenic Pulmonological Society, Mr. Loukidis Stylianos
  • Governor of the Aghia Sophia Children’s Hospital, Mr. Anastasios Michas
  • Administrator of the General Hospital of Attica “Sismanoglio”, Mrs. Rakopoulou Zoi
  • Governor of the General Hospital of Thessaloniki “Hippocrates”, Mr. Nikolaos Antonakis
  • Ann. Administrator of the General Hospital of Thessaloniki “G. Papanikolaou”, Mrs. Konstantinidou Anatoli
  • Director of the Nursing Service of the General Hospital of Sismanoglio, Mrs. Andriani Kakogianni
  • President of the Panhellenic Union of Pharmacists of Nursing Institutions – PEFNI & Director of the Pharmacy of Sismanoglio, Mrs. Despina Makridaki
  • President of the Panhellenic Association of Physiotherapists, Mr.
  • Treasurer of the Panhellenic Association of Dietitians and Nutritionists, Mr. Tsigas Alexandros
  • President, EURORDIS-Rare Diseases Europe, Avril Daly
  • CEO, Cystic Fibrosis Europe, Hilde de Keyser
  • Head of Public Affairs of the Hellenic Patients’ Association, Samouilidis Anastasios

11:30 – 13:00 (EET) Section A: “Cystic Fibrosis in the first steps – Prevention & Early Diagnosis”

Module topics:
– National strategies for the prevention and early diagnosis of Cystic Fibrosis
– Neonatal screening & carrier screening: developments and applications of diagnostic tools
– The role of the gynaecologist and the importance of informing young couples before conception
– From diagnosis to care: guidance and support for young parents
– Importance of early intervention to improve the long-term outcome of the disease
– Diagnosis of cystic fibrosis in adulthood: The importance of awareness and education of pulmonologists for early recognition of the disease
– National Cystic Fibrosis Registry and interface with the European Cystic Fibrosis Registry (ECFSPR) as a tool for recording, monitoring and national care planning
– The role of EDIKA in the development and exploitation of the Registry

Coordinator:
– Spinou Anna

Speakers:
– Kanaka-Gantenbein Christina
– Makρυθanasis Pericles
– Balassopoulou Angeliki
– Daskalakis Georgios
– Petrochilou Argyri
– Georgakopoulou Vasiliki
– Chanakas Ioannis
– Mitrou Panagiota
– Lutz Nährlich
– Zographopoulos Dimitris
– Davis Maria

Public questions

13:00 – 13:30 (EET) Break (light lunch)

13:30 – 15:00 (EET) Session B: “Cystic Fibrosis in children & adults. Holistic Care & Therapeutic Developments”

Module Topics:
– Cystic fibrosis in children and adults: peculiarities, challenges and complications (respiratory, gastrointestinal, nasal polyps, CFRD, etc.)
– Modern standards of care in Greece and Europe – experiences from the Centres & Cystic Fibrosis Clinics
– Treatments, drugs and newer innovative approaches (CFTR modulators, gene therapy, etc.)
– Personalised medicine and future perspectives in the care of patients with Cystic Fibrosis
– Research developments and participation of Greece in European networks of clinical studies
– The importance of nutrition in the management of Cystic Fibrosis – modern guidelines and practices
– Nursing care and support for patients with Cystic Fibrosis – the role of the specialist nurse in multidisciplinary teams
– The contribution of secretarial support to the operation of Cystic Fibrosis Centres – communication, organisation and liaison with patients

Coordinator:
– Constantina Giannaki

Speakers:
– Luko Ioanna
– Diamantea Filia
– Hadjiagorou Elpida
– Manika Ekaterini
– Fotoulaki Maria
– Paraskakis Emmanuel
– Perlepe Faye
– Lyberi Maria
– Hadjipanagiotou Ioanna
– Tsakona Anna

Public questions

15:00 – 15:20 (EET) Break (coffee)

15:20 – 17:00 (EET) Session C: “Lung transplantation – second chance for life”

Module Topics:
– Lung transplantation as a therapeutic option for patients with Cystic Fibrosis
– Conditions, procedure and criteria for selecting patients for transplantation
– Cooperation between Cystic Fibrosis Centres and a transplant unit
– The National Lung Transplant Programme in Greece – progress, challenges and prospects
– After transplantation: long-term care, complications and quality of life
– Psychological dimension of transplantation – preparation, support and adaptation of patients before and after transplantation
– The contribution of the transplant coordinator and multidisciplinary teams
– The role of the EMN in shaping a sustainable and effective transplantation system; cooperation with scientific groups and patient associations
– The transplant experience: testimonies of transplant patients and lung transplant candidates who participated in psychological empowerment activities of the Panhellenic Cystic Fibrosis Association

Coordinator:
– Spinou Anna, Giannaki Konstantina

Speakers:
– Tsagaris Hercules
– Frantzeskaki Frantzeski
– Theodoropoulos Fotis
– Guttmacher Vassilis
– Dzoka Anna
– Diliou Dimitra
– Gini Despina
– Antonopoulos Dimitris† (message in his memory from Rakitsi Stavroula)

Public questions

17:00 – 17:15 (EET) Break (coffee)

17:15 – 17:50 (EET) Session D: “Mental Health & Empowerment in Cystic Fibrosis-
Innovative Interventions & Life Stories”

Module Topics:
– Psychiatric assessment and monitoring of Cystic Fibrosis patients and transplant recipients
– Psychological resilience, self-management and quality of life of Cystic Fibrosis patients
– Cystic Fibrosis helpline: A vibrant channel of communication with the community
– Group online cognitive behavioral psychotherapy program – an innovative model of psychological support and empowerment for patients & caregivers
– Launch of a three-year randomized clinical trial of the group cognitive behavioral psychotherapy program
– Life with Cystic Fibrosis: Stories of strength from patients & caregivers who participated in the Association’s psychological empowerment activities

Coordinator:
– George Plakas

Speakers:
– Katsini Irini
– Rakitsi Stavroula
– Pavlidi Irini
– Giannaki Konstantina
– Bozini Irini
– Tiglianidou Melina
– Paliou Maria

17:50 – 18:30 (EET) Session E: “Secret Mission: Cystic Fibrosis – An innovative educational campaign with a special purpose”

Module Topics:
– Presentation of the 2nd edition of the children’s book “Secret Mission: K.I. 2” – objectives and content
– The power of information: how knowledge changes social attitudes towards Cystic Fibrosis
– The value of the Cystic Fibrosis Education Campaign for students, teachers, society: Promoting acceptance and empathy in schools
– Educational materials and methods of reaching students and schools
– Wider dissemination activities to schools, libraries and the public
– Free book distribution to all conference participants

Coordinator:
– Spinou Anna, Constantina Giannaki

Speakers:
– Noezaki Liana
– Spinou Anna
– Pavlidi Irini
– Krokou Zoe
– Koumaki Kalliopi

Free distribution of the new 2nd edition of “Secret Mission: Cystic Fibrosis 2”

*confirmation pending
Download the programme in PDF

Speakers (in alphabetical order)

  • Nikolaos Antonakis, Governor of the General Hospital of Thessaloniki “Hippocrates”
  • Antonopoulos Dimitris†, transplanted patient with Cystic Fibrosis (message in his memory from Rakitsi Stavroula)
  • Vildiridis Lillian Venetia, Secretary General of Health Services, Greek Ministry of Health
  • Vasiliki Georgakopoulou, Pulmonologist – Tuberculologist, Attending Physician B’, Infectious Diseases Unit, Department of Pathological Physiology of the University of Athens, Laiko Hospital, Head of the Respiratory System Infections Working Group of the Hellenic Respiratory Society (HPS)
  • Georgiades Adonis, Minister for Health
  • Konstantina Giannaki, Vice President of the Panhellenic Cystic Fibrosis Association, Caregiver of a patient with Cystic Fibrosis
  • Gini Despina, Cystic Fibrosis patient, candidate for lung transplantation
  • Nadia Gogozotou, Non-Executive President of EOPYY & Chairperson of the Drug Price Negotiation Committee of the Ministry of Health
  • Guttmacher Vassilis, Dr, Clinical Psychologist
  • Daskalakis Georgios, Professor of Obstetrics and Gynaecology, School of Medicine, University of Athens, Member of the Board of Directors of the Hellenic Society of Obstetrics and Gynaecology
  • Liana Nemezaki, author and illustrator of children’s books, co-founder of “Yellow Patini” publications
  • Diamantea Filia, Pulmonologist, Scientific Head of the Cystic Fibrosis Unit for Adults, Sismanoglio General Hospital
  • Dimitris Zografopoulos, Data Protection Officer (DPO), Greek Ministry of Health
  • Theodoropoulos Fotis, Attending Lung Surgeon, Onassis Heart Surgery Center
  • Andriani Kakogianni, Director of Nursing, Sismanoglio General Hospital
  • Kanaka-Gantenbein Christina, President of the Institute of Child Health, Professor of Pediatrics-Pediatric Endocrinology, Director of the 1st Pediatric Clinic and Research Laboratory of the National 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
  • Kani Xara, Pharmacist, Head of the Pharmacy Department of the National Health Services Organization (EOPYY)
  • Karpodini Theano , Director of the National Health Services Organization (EOPYY)
  • Katsini Irini Irini, Senior Consultant in Psychiatry, Asclepion Voula General Hospital, former Vice President of the Panhellenic Cystic Fibrosis Association, Cystic Fibrosis patient
  • Koumaki Kalliopi, Primary Education Teacher, Patient with Cystic Fibrosis
  • Krokou Zoi, PhD in Special Pedagogy, National and Kapodistrian University of Athens, Primary Education Advisor, Lecturer at the Hellenic Open University (Hellenic Open University)
  • Konstantinidou Anatoli, Anatoli, An. Administrator of the General Hospital of Thessaloniki “G. Papanikolaou”
  • Stylianos Loukidis, Professor of Pulmonology, Director of the 2nd Lung Clinic of Attikon General Hospital, President of the Hellenic Lung Society
  • Loukou Ioanna, MD, MSc, PhD, Pediatrician-Pediatric Pulmonologist, Head of Cystic Fibrosis Center, Paidon Aghia Sophia Children’s Hospital, Athens
  • Lyberi Maria, Dr., Scientific Editor of Human Gene Therapy, former Vice President of Research – Spirovant Bio, former Professor – University of Pennsylvania
  • Lymperidis Petros, President of the Panhellenic Association of Physiotherapists
  • Makridaki Despina, President of the Panhellenic Association of Hospital Pharmacists – PEFNI, Board Member of the European Association of Hospital Pharmacists (EAHP), Pharmacy Manager of the Sismanoglio General Hospital
  • Periklis Makrytanasis, Associate Professor of Medical Genetics, Faculty of Medicine, Hellenic University Medical School, Director of Medical Genetics Laboratory, Aghia Sophia Children’s Hospital
  • Manika Katerina Manika, Associate Professor of Pulmonology-Tuberculology, University of Thessaloniki, Adult Cystic Fibrosis Center, Pulmonology Clinic of the University of Thessaloniki, General Hospital “G. Papanikolaou”
  • Mitrou Panagiota, Head of the Department of Therapeutic Protocols and Registries, Greek Ministry of Health
  • Michas Anastasios, Governor of the Aghia Sophia Children’s Hospital
  • Angeliki Balasopoulou, Biologist, Laboratory Geneticist, Laboratory of Hemoglobinopathies and Cystic Fibrosis, Unit of Mediterranean Anemia, Laiko Hospital
  • Bozini Irini, Caregiver of a patient with Cystic Fibrosis
  • Boletis Ioannis, President of Onassis Heart Surgery Center, Professor of Pathology-Nephrology, School of Medicine, University of Athens
  • Maria Davis, Head of Production Operations, HICC
  • Diliou Dimitra, Transplant patient with Cystic Fibrosis
  • Antonis Papadimitriou, President of Onassis Foundation
  • Papadopoulos Nikitas Papadopoulos, Governor of the General Hospital of Thessaloniki “G. Papanikolaou” *
  • 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 “LAIKO” General Hospital
  • Papakosta Konstantina, President of the Institute of Pharmaceutical Research & Research and Technology (PHET) *
  • Emmanuel Paraskakis, An. Professor of Paediatrics, University of Crete, Head of the Cystic Fibrosis Clinic for Children, University General Hospital of Heraklion, Crete (PEPAGNI), President of the Hellenic Paediatric Respiratory Society
  • Pavlidi Irini, Psychologist – Mental Health Counsellor, Volunteer – Head of the Cystic Fibrosis Support Line
  • Faye Perlepe, Pulmonologist, Doctor of the University of Thessaly, Department of Medicine, Pulmonology Clinic of the University of Thessaly, Head of the Adult Cystic Fibrosis Clinic, University General Hospital of Larissa
  • Petrochilou Argyri, Pediatrician – Pediatric Pulmonologist, Attending Nurse A’, Cystic Fibrosis Department, Aghia Sophia Children’s Hospital
  • George Plala, Secretary General of the Panhellenic Cystic Fibrosis Association, Caregiver of a patient with Cystic Fibrosis
  • Rakitzi Stavroula, Dr., Dipl.-Psychologist Clinical psychologist with competence in Cognitive Behavioral Psychotherapy, Volunteer – Head of the group psychotherapy program of the Panhellenic Cystic Fibrosis Association
  • Rakopoulou Zoi, Administrator of the General Hospital of Attica “Sismanoglio”
  • Samouilidis Anastasios, Head of Public Affairs, Hellenic Patients’ Association
  • Spinou Anna, President of the Panhellenic Cystic Fibrosis Association, Member of the National Cystic Fibrosis Registry Working Group, Member of the Board of the European Organisation Eurordis- Rare Diseases Europe, ePAG representative ERN Lung, European Patients’ Academy (EUPATI) fellow, Retired Administrative Employee of Attikon General Hospital, Patient with Cystic Fibrosis
  • Tzoka Anna, Central Coordinator, Hellenic Transplantation Organisation (HTO)
  • Tiglianidou Melina, Patient with Cystic Fibrosis
  • Tsagaris Hercules, Professor of Pulmonology – Intensive Care at the University of Athens, Director of the Intensive Care Clinic of Attikon General Hospital, Scientific Director of the Lung Transplantation Center of the Onassis Cardiosurgical Center
  • Tsakona Anna, Secretary of the Adult Cystic Fibrosis Unit, Papanikolaou General Hospital
  • 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, Aristotle University of Thessaloniki
  • Tsigas Alexandros, Dietitian, MSc, PhDc Clinical Nutrition, Scientific Associate of Harokopio University, Treasurer of the Panhellenic Association of Dietitians – Nutritionists (P.S.D.D.) & Member of the Clinical Nutrition Working Group
  • Frantzeskaki Franzeska, Pulmonologist – Intensivist, Attikon Intensive Care Clinic, Attikon General Hospital Attikon
  • Fotoulaki Maria, Professor of Paediatric Gastroenterology at the Aristotle University of Thessaloniki, Director of Paediatric Gastroenterology, Hepatology and Nutrition, General Hospital “G. Papageorgiou”
  • Hatziagorou Elpida, Professor of Pediatrics – Pediatric Pediatric Pulmonology, University of Thessaloniki, Head of the Cystic Fibrosis Unit, General Hospital “Hippocration”
  • Hatzipanagiotou Ioanna, Nurse of the Cystic Fibrosis Unit for Adults, Sismanoglio
  • Avril Daly, President, EURORDIS- Rare Diseases Europe
  • Hilde de Keyser, CEO, Cystic Fibrosis Europe
  • Lutz Nährlich, Professor of General Pediatrics, Pediatric Allergology, Pediatric Pulmonology & Cystic Fibrosis, Director University Hospital Gießen and Marburg, Germany, Member of the Executive Committee of the European Cystic Fibrosis Registry ECFSPR

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