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 ...
Dear reader, I have read interesting information about research on bacteropphages on Pseudomonas aeruginosa. Is this a study that is going on in Europe?
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 ...
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 ...
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 ...
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 ...
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 ...
splicing mutation
Hello I would like to know if there is ongoing research regarding splicing mutations? Best regards
G542X mutation-PTC 124
I ‘ve just learned about the clinical development stop for Ataluren. My son has G542X mutation, I would like to know to if there are other ongoing clinical trials? Thank you
Correctors and specifical effects
Hello, I have a quite specific and probably detailed/scientific question: correctors like Orkambi or also the following models VX-661 etc. change also the salt content of the sweat etc, everything is regulated. Has this also an effect of the specific smelling of a human, means his pheromones and ...
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