- 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?
The team of the Cystic Fibrosis Support Line “Unlimited Breath” is at your side to advise you, guide you
and answer any question about the most common inherited disease.
Contact us for free every Tuesday: 14.00-18.00 (EET), Wednesday & Thursday: 16.00-19.00 (EET).
What is the CF Helpline "Unlimited Breath"?
This is the first Panhellenic Helpline in Greece, which is specifically addressed to Cystic Fibrosis and provides psychosocial support and information about the disease. An initiative of the Hellenic Cystic Fibrosis Association, aiming to empower everyone who is affected by Cystic Fibrosis or anyone who needs information about the most common hereditary disease and organ donation.
Can I contact the Helpline?
The Cystic Fibrosis Support Line “Unlimited Breath” is there for anyone seeking information and accurate information about the disease, as well as for those who need psychosocial support regarding any aspect of life with Cystic Fibrosis.
The CF Helpline can contact:
- Anyone who has questions or wants to know more about Cystic Fibrosis and organ donation/transplantation
- Anyone directly or indirectly affected by the disease
- Patients with Cystic Fibrosis
- Transplanted patients with CF
- Parents and caregivers of patients with CF
- Family, partners, friends, relatives of patients with CF
- Carriers of the disease
- Teachers, employers, health professionals and other professionals
Who will answer the Helpline?
The Line’s receptionists and communication support are a psychologist and a social worker(here), who treat every conversation with respect and confidentiality. Every conversation is protected by confidentiality. The Line managers are in close cooperation with:
The Board of Directors of the Association, for continued support of line managers in any matter needed. The head of the Association’s psychotherapy groups, Dr. Dipl.-Psych. Stavroula Rakitsi, for linking beneficiaries with the Association’s group psychotherapy program. The C.I. Scientific Committee, Cystic Fibrosis Centers & Transplant Centers, for medical information, referral and linking beneficiaries with specialized centers. External support networks (public health structures, social services, voluntary organisations, etc.), for linking with additional support structures.
What kind of help can I get?
- We provide information on Cystic Fibrosis, prenatal screening, organ donation, transplantation, etc.
- We answer any questions about the disease.
- We share with you the psychological burden of living with Cystic Fibrosis and we suggest you solutions to improve your life with the disease.
- We answer questions about health benefits, allowances, socio-economic benefits, education, employment, pension, etc., concerning patients with CF and their families.
- We connect you with support networks..
- We inform and guide the community about activities and patient support programs of the Hellenic Cystic Fibrosis Association.
The CF Helpline does not provide medical advices or services. For medical advice, such as diagnosis, medication, treatments, etc., please contact the CF Centers.
"When I called the helpline, I was in my fourth month of pregnancy and I was under a lot of pressure. I had just found out I was a carrier of C.I. and was worried that my child might be born with the disease. I had guilt and tremendous anxiety. The line team listened to me sympathetically, referred me to a specialist centre and provided me with accurate information to help me manage the situation. Thanks to their support I moved on stronger and calmer."
"My son didn't want to wear the mask for his treatments and we as parents had reached our limits. The helpline was there for us. They gave us practical advice and guided us in consultation with the C.I. Center. In addition, they sent us the children's book "Secret Mission: Cystic Fibrosis", which helped us to better understand his feelings and make him feel that he is no different. We now feel more confident and competent as parents."
"The helpline team helped me to understand what documents were needed for my car registration fee exemption and guided me step-by-step through my application. They even informed me about the procedure at the CDCs and gave me instructions on how to send my medication home from the NHS. With their help, I was saved stress and hassle."
"As a transplant recipient, I felt that no one understood me and I had a hard time dealing with my retirement process. Through the helpline I learned about my rights and was connected to the online Cystic Fibrosis social media community on Facebook, where I became close to people with similar experiences. It changed my life and I realised 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 the parents of one of my students informed me that he had Cystic Fibrosis, I called the helpline directly because I didn't know how to support him. They gave me practical advice on how to provide 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 CF are no different. The help of the line 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 in the Tzaneio for organ donation and called the helpline. They informed me in a simple way what organ donation means, how it saves lives and what the procedures are. Thanks to our conversation, I made the decision to become an organ donor myself. This act made me feel that I can offer something valuable to people in need."
The CF Helpline "Unlimited Breath" could not have become a reality without the support of the employees of Teva Pharmaceuticals and the Humanizing Health Awards 2023, which awarded the Hellenic Cystic Fibrosis Association and embraced our idea.
Connect with Greek CF community
Are you a Cystic Fibrosis patient or caregiver and you want to chat with members of the Association, patients and families with CF, from all over Greece in a safe online space? Connect with the Cystic Fibrosis online community of the Hellenic Cystic Fibrosis Association.
- Join the Association’s private Facebook group “HCFA || Members Contact Group” by filling in your details here.
- Participate in the monthly zoom online coffee break support meetings, announced monthly on the Association’s website.
In the online CF community you can participate and follow private discussions, concerning CF, without being publicly exposed to third parties. You can share your private thoughts and sensitive information with other community members about your daily life with CF, your experiences, best practices, treatments, social benefits, etc.
In the CF community no one is alone!