The Association offers “Unlimited Breath” to patients with Cystic Fibrosis throughout Greece with the free provision of respiratory devices, such as nebulizers, individual spirometers, portable oxygen concentrator.
Our aim is to support patients in carrying out their daily treatments and improve their self-management of the disease.
Individual spirometers
Since the beginning of the covid-19 pandemic, the Association has been providing free portable individual pocket spirometers to Cystic Fibrosis patients throughout Greece, aiming to improve their health and quality of life.
The Association has donated over 300 individual spirometers to adult and juvenile patients with Cystic Fibrosis throughout Greece through donations from individuals, institutions and companies.
These are portable devices for remote monitoring of patients’ respiratory function, as in Cystic Fibrosis the organ that is destroyed first is the lung. Individual spirometers also help in the self-management of the disease, while at the same time reducing regular hospital visits, resulting in protection from hospital-acquired microbial infections.
Spirobank Smart individual spirometers are manufactured by the widely recommended and trusted company MIR and are designed and available to organisations. Their specifications have been tested and approved by the Association’s Scientific Committee, and these spirometers have been administered to patients in America in a similar initiative by the Cystic Fibrosis Foundation. The spirometers is connected to the patient’s smartphone or iphone via a special application. The results of the test can be sent by the patient to the treating physician in pdf format by email or by postin real time via a special application.
To get a free personal spirometer, fill in your details
here
.
Portable oxygen concentrator
Despite the advent of innovative treatments that “freeze” the disease, a small number of patients with poor respiratory function continue to need oxygen therapy.
The Association has secured a portable oxygen concentrator and provides it free of charge to Cystic Fibrosis patients throughout Greece, who are undergoing oxygen therapy and wish to use it in their travels.
Patients who wish to use the portable oxygen will need to fill in their details here and will be followed by a briefing on the collection procedure from the Association’s offices.
* The portable oxygen concentrator is an Inogen One G3 with a flow rate of up to five (5) litres/minute and a rechargeable 16-Cell battery with up to eight (8) hours of autonomy with an average flow rate of two (2) litres/minute when the battery is fully charged. The condenser comes with a charger and a carrying bag.
Nebulisers for inhaled drugs
The nebulizer is essential for daily inhalation of medications as part of the daily treatment of Cystic Fibrosis patients to maintain their respiratory function.
Until 2018, the Panhellenic Association had donated more than 40 nebulizers to patients with Cystic Fibrosis throughout Greece, as the purchase of a new generation nebulizer was not fully reimbursed by EOPYY.
Following the actions of the Association in cooperation with EOPYY, from 2018, insured patients can obtain the new generation eflow nebuliser and its consumables free of charge, which has been included in a separate reimbursement budget.
However, as the needs of uninsured patients must also be met, the Association provides free eflow nebulisers to uninsured patients with C.I. Also for patients, who according to the attending physician, they need a turbo boy nebulizer and unable to cover the cost of the device, the Association provides free of charge turbo boy nebulizer.
Patients wishing to obtain a nebuliser will need to fill in their details here and information on the procedure will follow.
Respiratory rehabilitation programme
In 2014, shortly before the launch of the 2nd innovative CFTR Modulator treatment that “freezes” the disease, the Hellenic Cystic Fibrosis Association started supporting the respiratory rehabilitation program, which included specialized respiratory physiotherapy and personalized exercise for CF patients. The aim of the programme was to keep the patients in the best possible condition and improve their respiratory function.
The programme ran from 2014 to 2016, with two sub-programmes organised and supported by the Association. The first one concerned adult patients in Athens and took place in the Respiratory Rehabilitation Unit of the 1st University Pulmonology Clinic of the “Sotiria” Hospital, in collaboration with the “Thorax” Foundation and the Adult Cystic Fibrosis Unit of the “Sismanoglio” Hospital. The second one concerned children with Cystic Fibrosis in Thessaloniki and was carried out in collaboration with the 3rd Pediatric University Clinic of the Aristotle University of Thessaloniki, the CF Department of the General Hospital “Hippokratio” and the Faculty of Pediatrics of the Aristotle University of Thessaloniki. The results were impressive, as after completing the programme most patients were able to improve their respiratory function by up to 10%.
The results of the program and the benefits of physiotherapy and personalized exercise in Cystic Fibrosis were presented at three-day conferences organized by the Association in 2015 and 2016 in Athens and Thessaloniki entitled “Physiotherapy & Exercise in Cystic Fibrosis”. Specialized doctors and health scientists from Greece and abroad participated in the conferences, informing patients and their families about the value of regular specialized physiotherapy and personalized exercise and training them in physiotherapy techniques. The conferences were also attended by physiotherapy students and health professionals, who were informed about the disease and the specialised physiotherapy techniques in Cystic Fibrosis.
