As it has been announced, the Panhellenic Cystic Fibrosis Association, in the context of continuous patient support and cooperation with the medical community, proceeds to the establishment of the Lung Transplantation Working Group.
This initiative is part of our strategy to strengthen patient care, needs assessment and systematic cooperation with all relevant centres, scientists and institutions of the National Health System.
Purpose of the Working Group
The Transplant Task Force is set up with the aim of:
- collecting the experiences and needs of transplant patients and those on the lung transplant list,
- recording issues relating to the daily life of transplant patients,
- the recording and processing of proposals from transplant recipients,
- the strengthening of cooperation with the National Lung Transplant Program and all Cystic Fibrosis Centers and C.I. Clinics in the country.
The Working Group functions as an institutional space for dialogue and co-construction, with the sole aim of providing quality patient care.
First Online Working Group Meeting
The first meeting of the Working Group will take place online on Wednesday, 10 December, at 20.30, via Zoom. A link will be sent to those who register.
The meeting will present the purpose of the Group, discuss initial work priorities and the needs of transplant patients.
Declaration of participation
Those who wish to participate in the first meeting can fill in the form here: https://forms.gle/QrgyHgZMf3BNGaZGA
More information can be obtained from the Association’s email: helpline@cysticfibrosis.gr
Who can participate in the meeting
- Transplant patients with Cystic Fibrosis
- Patients with CF who are on a lung transplant list
- Carers of transplanted or transplant candidate patients with CF (first degree of consanguinity)
- The Group will operate under the coordination and supervision of the Board of Directors of the Association in a framework of mutual respect, security and constructive cooperation.
The Panhellenic Cystic Fibrosis Association remains firmly committed to supporting every patient and family, to promoting responsible and informed collaboration with the medical community, to developing actions that enhance the quality of care and to maintaining a safe, calm and unifying framework for our entire community.
With cooperation, institutionality and respect, we continue our common struggle for Unlimited Breath and the Second Chance for Life for every patient.
