Hello, I would like to know if Bronchitol® (Mannitol) is finally available in France and if the study for children older than 6 years has given positive results. Thank you
Move to France from UK with a 2.5 yr old with CF
My son has CF, with two copies of deltaF508. He has excellent health care in the UK and remains well, despite culturing pseudomonas 3 times in his first 18 months. Now my husband has had a good job offer in the South of France and wants us all to go. What would our position be with regard to ...
Dear expert team, I am a 24-year old girl suffering from CF. I come from Bulgaria, where there is no European standard therapy and no CF-experts either. That means that I get information about new drugs from German and English articles. I have read several times about Kalydeco® (for G551D). I ...
Going to kindergarten or school with MRSA?
Hello, My son (CF) is 25 months old now and has been MRSA positive again and again since he was 3 months old. There have been several eradication attempts, various iv therapies, antibiotics inhalation, and continuous oral therapy with co-trimoxazole. He is then negative for a few months and ...
Elastase test
I would like to ask about the elastese test. Must the stool sample be of the same morning as the test, or can it be of the night before? Is the test necessary for social security?
Plane tickets
We planned to go to Martinique for holidays but due to the medical exams of my CF son, a dangerous germ has been found. Therefore, a transfer to hospital is advised. Antibiotic treatment was recommended. Therefore, the trip is being questioned. Not having any insurance, the Company denies me any ...
Kalydeco (VX770/Ivacaftor)
Have just read the devastating news on the CF Trust Forum that NICE (National Institute for Health and Clinical Excellence in the UK) are not going to recommend the National health service (NHS) provide Kalydeco in UK and want to know your thoughts and any suggestions on this to get it available? ...
Query about the coverage of the cost of drugs
The pharmacist, from whom i get the drugs for my child all these years, has informed me that I have to pay the drugs in advance, deposit the invoices and get my money back after several months. I cannot afford to pay this kind of money every month. What can I do if I need tadim® (colistimethate ...
Vitamin D target value and refund
Hello, I was just searching about your expert advice platform and found the statement that the target value for vitamin D is 20ng/ml. This is not according to the newest recommendations which suggest at least 30ng/ml. Question: Most patients do not get their vitamin D preparations reimbursed ...
Hello, I would like to know the latest status concering the prescription of Vedrop® in patients with cystic fibrosis. Our CF center informed me that the company withdrew the approval for individuals with CF and that therefore they do not prescribe the drug anymore since the health insurance ...