Topics

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 ...
26.02.2013
Kalydeco®
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 ...
05.02.2013
Health and wellness
What are ways to make life easier for patients with cystic fibrosis?
13.11.2012
Belgian CF Registry
Hello, where can we ask for the Belgian CF Registry? Thank you for your answer
25.10.2012
Precautions and risk of contamination at the dentist
Hello, are there any health precautions to take when you visit the dentist? What are the recommendations to give to the practitioner? Thank you
11.09.2012
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? ...
09.07.2012
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 ...
25.06.2012
drug for pseudomonas
Good evening. I have pseudomonas in my lungs since many years ago. I follow a treatment with tobi® and tadim® (colistimethate sodium powder) interchangeably. Is there a medication that is cheaper than tobi?
11.06.2012
association in Morocco
Hello, A friend has a ​​9 month old baby, he has just been diagnosed with CF. The doctors are not trained because there are very few cases in Morocco. I am doing some research to help. I turn to you. Are there specialized units? Rabat? Casablanca? .... Is there an association that could ...
02.05.2012
CF teams in the Netherlands
Where are the 7 CF teams situated in the Netherlands?
02.05.2012
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