Topics

Dental brace/retainer in Cystic Fibrosis
Are braces (that cannot be removed) problematic from a hygienical point of view? Would you prefer a retainer (removable orthodontic appliance)? We as parents would rather prefer braces (that are attached to the teeth and cannot be removed) for our child. Many thanks.
06.05.2015
CF medical insurance coverage in EU
I will go from Russia to Budapest (Hungary) for working reasons, soon. My wife has CF. Me and her, we will work in Budapest and have a health insurance. How is the needed medical care there? What about drugs (Pulmozyme and Tobi), does it mean it is covered by the health insurance or do we have to ...
06.05.2015
Brace
Hello, should CF patients disinfect their moblie braces daily, respectively can they be put into the vaporiser? Thank you very much!
02.04.2015
Bite splint
Hello, I am suffering from CF, am chronically colonized with Pseudomonas and have now recieved a bite splint from the dentist due to nightly teeth pressing. Even if the dentist knows about my CF, he said after I have asked him, that I would not have to pay attention to a special hygiene ...
02.04.2015
CF baby
Our baby (24 months old) is suffering from cystic fibrosis lung disaease for 2 years. Is there an organization that can help us to be treated in France? With our thanks in advance
02.03.2015
Sputum Cytology Examination (SCE)
Hello, My little son, aged 5, had no sputum culture for several months. Indeed, during the last 3 controls in his CF center, no sample of sputum was possible (nothing back). If during the next visit no sample can be obtained, what is going to happen? How do we know that there is no ...
12.02.2015
Therapeutic education
Hello I am a nurse and I am in training to become a pediatric nurse. I would like to make my project work of the end of studies on therapeutic education for parents and young cystic fibrosis patient. During my research, I realize that only the "coordinator nurse" or the CF therapeutic education ...
12.02.2015
Kalydeco® for children
Dear expert team, is there any concrete information about the time of licensing of Kalydeco® for children from 2-5 years? How successful were the studies? My daughter has G551D, can the health insurance in spite of this refuse to pay the costs? Are there any reasons that speak against ...
03.01.2015
Care of CF people
Hello, I wanted to know how the people affected by the cystic fibrosis are taken care of? Thank you
17.12.2014
Dimension of premises
Hello, I have to outline plans for premises of a CF Center. I will use the existing premises. I need to know if there are standards to meet especially for CF premises or if it can be similar to usual consulting rooms: - Consultation room - Physiotherapy room - Multipurpose room (meeting ...
03.12.2014
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