Lung Transplant Working Group

  • Have you ever had a lung transplant?
  • Are you on a waiting list or pre-transplant screening?
  • Not in the transplant process, but have thoughts or questions on the subject?
  • Are you a parent or carer of a child or adult patient?
  • Have you supported a patient through the lung transplant journey?

Your experience and thoughts can bring out the real needs of the community. Complete the questionnaire.

Panhellenic survey to record community experiences and views

In the framework of the Lung Transplant Working Group, the Panhellenic Cystic Fibrosis Association is conducting a nationwide survey to record experiences, thoughts, needs and the overall attitude of the community towards lung transplantation in Greece, with the participation of patients (transplanted and non-transplanted) and patient caregivers (children and adults).

🔹WHAT IS THE PURPOSE OF THE INVESTIGATION?

The aim of the initiative is to better understand the patient journey, from information and referral to the transplant procedure and follow-up, and the difficulties that may arise at each stage. At the same time, it seeks to capture the views, concerns and overall attitudes of the community towards lung transplantation, whether or not participants are undergoing the procedure.

🔹WHO CAN REPLY TO THE QUESTIONNAIRE?

The questionnaire is addressed to all patients with respiratory diseases (transplanted and non-transplanted) and their carers (parents of children & adults, partners-spouses, family members, friends, etc.) regardless of their stage of disease or their relationship with lung transplantation and in particular to:

  • patients who have undergone a lung transplant
  • patients on a waiting list or undergoing pre-transplant screening
  • patients who are not undergoing a transplant procedure but have thoughts, questions or concerns about lung transplantation
  • carers or parents of sick children or adults who are not undergoing a lung transplant procedure
  • caregivers who have supported a patient through the lung transplant route
  • caregivers who have experienced patient loss

Even if you have no direct connection to the transplant or are in stable health, your opinion is important.

* The study involves people with Cystic Fibrosis, as well as people with other respiratory conditions associated with lung transplantation.

🔹WHY IS EVERYONE’S PARTICIPATION IMPORTANT?

Your participation in the research helps to highlight the real needs and experiences of patients and carers as they are experienced in everyday life. The resulting data will be used to formulate evidence-based recommendations, in collaboration with the scientific community and relevant bodies, with the aim of improving lung transplantation services in Greece.

🔹COMPLETE THE QUESTIONNAIRE by 30/4/2026: HERE

Duration: 3-5 minutes | Anonymous participation

What is the Lung Transplant Working Group

The Working Group was formed at the end of 2025 by the Panhellenic Cystic Fibrosis Association, through meetings with the participation of patients, caregivers and representatives of the Association, with the aim of creating a stable mechanism for recording experiences and dialogue.

It is part of the Association’s ongoing effort to strengthen the voice of patients and promote patient-centred care, contributing to the meaningful expression of their experiences and needs. In a modern patient-centred healthcare system, the patient, in addition to being a recipient of care, is an active interlocutor and partner in the continuous evolution of the system.

Patients’ experiences are valuable data that can be used in the development of health policies and the evolution of care services.

🔹OBJECTIVES OF THE WORKING GROUP
  • Recording patient and carer experiences and concerns
  • Highlighting the needs and challenges at all stages of the lung transplant pathway
  • Formulation of documented proposals for the development of the lung transplantation system in Greece
  • Strengthening cooperation with the scientific community and relevant bodies

The action of the Association in transplants

Lung transplantation is the only life-saving option for patients with Cystic Fibrosis and other respiratory diseases who are in the final stage of respiratory failure.

Η Action of the Lung Transplant Working Group is part of the long-term contribution of the Panhellenic Cystic Fibrosis Association in the field of lung transplantation. The aim of the Association remains the equal and timely access of all potential patients to lung transplantation, as well as the specialized post-transplantation follow-up, through institutional cooperation and meaningful dialogue.

From the Association’s contribution to the the signing of a transnational cooperation agreement between Greece and the AKH transplant centre in Vienna in 2014, to the support of the national lung transplant programme which started in 2019 in our country, the Association plays an active role in the field of lung transplantation.

At the same time, through the organ donation campaign “Unlimited Breath – Be a Life Donor”, the Association constantly contributes to informing and raising public awareness.

Complete the questionnaire HERE
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