- Looking for information on Cystic Fibrosis, neonatal screening, lung transplantation?
- Do you need support to deal with CF?
- Do you have questions about your benefits and rights as a CF patient or caregiver?
- Do you need to talk about the issues you face as a lung transplanted CF patient?
We are here for you tp support you and answwer to your questions.
Contact us for free every Tuesday& Thursday: 16.00-19.00.
What is the CF Helpline "Unlimited Breath"?
The first nationwide helpline in Greece dedicated specifically to Cystic Fibrosis, providing psychosocial support and information about the disease. An initiative of the Hellenic Cystic Fibrosis Association, aiming to empower those affected by Cystic Fibrosis and to raise awareness among the general public about the most common genetic disorder and organ donation.
Can I contact the Helpline?
The Cystic Fibrosis Support Line “Unlimited Breath” is there for anyone seeking reliable information about the condition, as well as for those in need of psychosocial support regarding any aspect of living with Cystic Fibrosis.
Helpline is available to:
- Anyone who has questions or wants to learn more about Cystic Fibrosis and organ donation/transplantation
- Anyone directly or indirectly affected by the condition
- People living with Cystic Fibrosis
- Transplant recipients with Cystic Fibrosis
- Parents and caregivers of people with Cystic Fibrosis
- Family members, partners, friends, and relatives of people with Cystic Fibrosis
- Carriers of the disease
- Teachers, employers, healthcare professionals, and other professionals
Who will answer the Helpline?
The Line’s receptionist and communication support is a social worker(here), who treats every conversation with respect and confidentiality. Confidentiality is protected in every conversation. The Line Manager is in close cooperation with:
The Board members of the Association for continued support on any issue needed.
The head of the Association’s psychotherapy groups, volunteer psychologist Dr. Dipl.-Psych. Stavroula Rakitsi, for linking beneficiaries with the Association’s group psychotherapy program.
The volunteer psychologist Irini Pavlidis, for referrals of beneficiaries on any issue of psychological support needed.
The C.I. Scientific Committee, the Cystic Fibrosis Centres & the Transplantation Centres, for medical information, referral and linking beneficiaries with specialised centres.
External support networks (public health structures, social services, voluntary organisations, etc.) to link with additional support structures.
What kind of help can I get?
- We provide information on Cystic Fibrosis, newborn screening, organ donation, transplantation, etc.
- We respond to any questions related to the condition.
- We share the psychological burden of living with Cystic Fibrosis and suggest ways to improve disease management.
- We provide guidance on healthcare benefits, allowances, socio-economic support, employment and pension matters, etc., concerning people with Cystic Fibrosis and their families.
- We refer individuals to the appropriate support networks and relevant services.
- We inform and guide the community about initiatives and patient support programs of the Hellenic Cystic Fibrosis Association.
“When I called the helpline, I was in my fourth month of pregnancy and feeling immense pressure. I had just found out that I am a carrier of Cystic Fibrosis and was worried that my child might be born with the condition. I felt guilty and extremely anxious. The helpline team listened to me with understanding, referred me to a specialized Center, and provided reliable information that helped me manage the situation. Thanks to their support, I was able to move forward feeling stronger and calmer.”
“My son didn’t want to use the mask for his inhaled treatments and as parents we had reached our limits. The helpline was there for us. They gave us practical advice and guided us in coordination with the Cystic Fibrosis Center. In addition, they sent us the children’s book “Secret Mission: CF”, which helped us better understand his feelings and made him feel that he is not different. Now we feel more confident and capable as parents.”
“The helpline team helped me understand what documents were required for the exemption from my vehicle road tax and guided me step by step through the application process. They also informed me about the procedure at the Disability Certification Centers (KEPA) and gave me instructions for home delivery of my medication through the National Organization for Healthcare Services Provision (EOPYY). With their help, I avoided stress and unnecessary hassle.”
“As a lung transplanted CF patient, I felt that no one understood me, and I was struggling a lot to complete my pension process. Through the helpline, I learned about my rights and was connected with the Cystic Fibrosis online community on Facebook, where I met people with similar experiences. It changed my life and made me realize that I am not alone.”
"I called the helpline because my daughter was having trouble breathing and I was afraid she might have Cystic Fibrosis. I didn't know anything about the disease, but the people on the line reassured us, explained everything we needed to know and referred us to a qualified doctor."
“When a student’s parents informed me that he has Cystic Fibrosis, I immediately called the helpline because I didn’t know how to support him. They provided me with practical advice on how to create a supportive environment and sent me the book ‘Secret Mission: Cystic Fibrosis’. Through an educational program, I helped the whole class understand that people with Cystic Fibrosis are not different. The helpline’s support was invaluable.”
"When my friend told me he had Cystic Fibrosis I was shocked and scared that I would lose him. Through the line I was informed about the disease and learned how to be there for him without stress."
“I saw the Association’s mural at Tzaneio Hospital about organ donation and called the helpline. They explained in simple terms what organ donation means, how it saves lives and what the procedures are. Thanks to our conversation, I decided to become an organ donor myself. This decision made me feel that I can offer something truly valuable to people in need.”
The action of the Cystic Fibrosis Support Line "Unlimited Breath" could not have become a reality without the support of the employees of Teva Pharmaceuticals and the Humanizing Health Awards 2023, which named the Panhellenic Cystic Fibrosis Association as the winner and enthusiastically embraced our idea.
Connect with Greek CF community
Are you a person living with Cystic Fibrosis or a caregiver and would like to connect with members of the Association, patients, and families from across Greece in a safe online space? Join the Panhellenic Cystic Fibrosis Association’s online community.
- Become a member in the private Facebook team of the Association “HCFA || Ομάδα Επικοινωνίας Μελών”, filing your personal info here.
- Take part in online peer support meetings coffee breaks, whixh are announced in the HCFA website.
In the Cystic Fibrosis online community, you can take part in and follow private discussions covering all aspects of the condition that concern the community, without being publicly exposed to others. You can exchange views and sensitive information with other members on important issues related to your daily life with the condition. You can also share your experiences and best practices on managing the disease, new treatments, social benefits, and more.
In the Cystic Fibrosis community, no one is alone!