From the moment of diagnosis, a difficult journey begins for patients with CF and their families. Patients and caregivers often experience anxiety, insecurity and negative emotions that they carry throughout their lives, to the detriment of their health and quality of life. Often families marginalise and/or conceal the disease in order to avoid social stigma. Patients are also poorly informed about their rights and the benefits to which they are entitled, adding to the psychological burden of the disease.
The Association has developed the psychosocial support programme “Unlimited Breath” for patients with Cystic Fibrosis and their carers. The aim is to provide psychoeducation and empowerment of the community throughout Greece, to improve the daily life and quality of life of patients and their families.
Psychotherapy groups
The Association offers free of charge to its members the psychological support group programme for patients and carers throughout Greece.
The groups educate, guide and empower patients and their caregivers in managing anxiety and negative emotions arising from the disease, improving mood, strengthening assertive behaviour, reframing their lives to new challenges and new circumstances, and introducing bereavement management.
Each cycle of the programme lasts 3 months and the meetings take place online once a week. The patient groups include patients with Cystic Fibrosis over 18 years of age, while the caregiver groups include parents, spouses-partners of patients, family members, etc. The coordination of the groups is done voluntarily by the psychologist Dr. Dipl.-Psych. Stavroula Rakitsi, whom we thank warmly for her contribution. See her short CV here.
The results of the project demonstrate that group cognitive behavioural psychotherapy is an important part of the health and mental health of CF patients and their caregivers.
Online support meetings / coffee breaks
The Association organises monthly online support meetings (coffee breaks) for community members (patients, caregivers, etc). The online meetings give the chance to members of the Association from all over Greece to get in touch with each other.
During the support meetings participants share their questions and concerns, their personal experiences and good practices regarding the disease, so that no one feels alone.
There are also open discussions around issues that concern members, such as medicines, treatments, monitoring and care, transplants, benefits- rights. There is also discussion and information on current issues concerning the disease.
The support meetings take place online once a month through the zoom platform, while the date and time of the meeting is announced every month a few days before the meeting. The meeting link is sent by email a few hours before the start of each meeting.
Private Facebook community group
In 2020 the Association created the private facebook group “HCFA || Members’ Communication Group“. The group gives the possibility to to the members of the Association, patients with C.F. and caregivers from all over Greece, to chat and connect with each other ina secure online space, without being publicly exposed to third parties. In the private communication group members are able to:
- participate and/or attend private community discussions on all issues related to Cystic Fibrosis
- exchange views and sensitive information on issues that affect their daily lives
- share their experiences of living with Cystic Fibrosis, as well as good practices, new treatments, etc.
Connect online with the CF community by filling in your details by pressing the button below.
* Since 2012 the Association has created the public group “Cystic Fibrosis-CYSTIC FIBROSIS – GR“, which can be joined by anyone from the Cystic Fibrosis community or the general public interested in being informed about Cystic Fibrosis.
Children's Book
In 2023 the Association created the first interactive children’s book on Cystic Fibrosis in Greece, the “Secret Mission: C.F.”. The book aims to. help children with Cystic Fibrosis to accept the disease and show them that if they follow their daily schedule of treatments, nothing can limit their lives. The illustration and the writing of the book was undertaken by the famous author of children’s books, Liana Denezaki, in collaboration with the CF Scientific Committee and the BOD of the Association.
The book and the accompanying pouch with the secret agent’s tools are distributed free of charge by the Hellenic Cystic Fibrosis Association and the C.F. Centers to young and old patients with Cystic Fibrosis. But also to anyone who wants to discover the secrets of the disease and to discover the unlimited possibilities that it has, not only for anyone who has Cystic Fibrosis, but also for every person who faces any difficulty in his life!
Browse through the book and get it for free along with the Secret Agent’s gear by pressing the button below.
"Unlimited Breath" helpline
The Association launched the first national CF Helplone in Greece. The “Unlimited Breath” Helpline provides psychosocial support to those directly or indirectly affected by Cystic Fibrosis, such as patients, transplant patients, parents, caregivers, relatives, friends, carriers of the disease, with the aim of strengthening the C.F. community in Greece. The Helpline team consists of a specialized psychologist and social worker and is there for anyone who needs to share the psychological burden of the disease, receive guidance on social benefits and rights for CF, but also to be informed about the disease, newborn screening, organ donation, etc.
The Helpline is open every Tuesday: 11.00-15.00, Wednesday & Thursday: 15.00-19.00
- By phone at 2110-137700 (local charge for all Greece)
- By email to helpline@cysticfibrosis.gr
- Via live chat in the chatbox of the Helpline or on the Association’s social media
Benefits- Rights Guide
Because of the demanding management of Cystic Fibrosis, patients and their families often have limited and/or incomplete information about their rights and the detailed procedures they need to follow to access the benefits they are entitled to. This makes them feel insecure and stressful, make the burden of the disease more difficult.
The Association has created a detailed “Cystic Fibrosis Benefits/ Rights Guide” on the redesigned website, which is updated regularly. In the guide, C.F. patients and caregivers are able to find detailed information and relevant legislation (government regulations, etc.) concerning health benefits, allowances, socio-economic benefits, but also specific arrangements for the C.F. concerning education, employment, retirement, etc. The aim of is to inform the Cystic Fibrosis community in our country about their rights and the procedures for accessing benefits that improve their health and quality of life.