Topics

Genetic therapy / coloscopy of the large bowel (organoids)
Dear experts, in facebook, many parents from Russia want to have a test done at the CF Center in Leuven, Belgium (coloscopy of the large bowel) in order to know, whicht gene technique is suitable for their child with CF. How realistic is that? It should not cost anything. Do you have any further ...
15.02.2019
Symkevi
Dear expert team, what do you think, when will Symkevi be on the market in Germany? I read in some articles that it should be more efficient than Orkambi (2% more increasing of the lung function compared to Orkambi). Also the side effects seem to be markedly less. Furthermore, if the ...
26.10.2018
CFTR correctors
Dear expert team, on the 27th of july 2018the European committee for human drugs has licensed a new drug for delF508 and delF508+residual function mutation. Is this drug also licensed for patients with a residual function mutation or only in combination with delF508? Especially for the rare ...
26.10.2018
Stem cells from cord blood?
Hello, our first child suffers from CF, and we are expecting our second child (healthy carrier). One reads again and again about advertisment for freezing of cord blood after birth. Do you see a potentially advantage in the (far) future of cord blood respectively cord blood stem cells of a ...
05.03.2018
bacteriophages
Dear reader, I have read interesting information about research on bacteropphages on Pseudomonas aeruginosa. Is this a study that is going on in Europe? http://www.ampliphibio.com/product-pipeline
09.02.2018
Organoid usage in Switzerland
I want to know if it is possible in Switzerland to test new substances/drugs mutation-specifically with organoids (mini-gut of stem cells)! According to Hans Clevers biotechnology Hubrecht institute with that substances can be tested for seldom mutations. I mean study substances for CF ...
12.12.2017
Kalydeco and enzymes
Hello, my daughter gets Kalydeco for 16 months now. Now it came out more and more, that she gets constipation and stomach ache with the normal dosage of enzymes. We have markedly reduced the enzymes then. Unfortunately, this was not successful either. Then we did not give any enzymes at all ...
12.06.2017
Orkambi and diabetes
Hello, my son takes Orkambi for a short time period. He has CF and diabetes, that is treated with Repaglinide (3 x 0.5mg). Among the drug interactions of Orkambi is is written, that is decreases the effect of Repaglinide. Is it therefore sensible to go on taking Repaglinide or are there any ...
12.06.2017
Lung produces since recently extremely much mucus, why?
Dear expert team, my brother, my sister and me, we suffer from CF. Unfortunately the condition of my brother worsened extremely in the last 4 weeks. The reason is until now not really clear. He got 5 weeks ago ORKAMBI as a new drug. Unfortunately it seems that at the same time a pneumonia came ...
12.06.2017
Experimental treatment
Hello I’ve got cystic fibrosis with F508del and Q1411X mutations. I was sfor one year and a half under Ataluren experimental-treatment. Yesterday, I was told that the protocol is ending immediately because of a lack of significant results from the clinical trial. Nevertheless, for me I saw a ...
29.05.2017
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