Topics

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
splicing mutation
Hello I would like to know if there is ongoing research regarding splicing mutations? Best regards
26.05.2017
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
26.05.2017
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 ...
26.05.2017
Crispr Cas 9
Hello, unfortunately our two daughters (7 years and 7 months) suffer from CF. We are in very good care and both girls are fit and stable. Some days ago my physician wanted to know something about the health status of our girls. He mentioned also Crispr Cas and was interested in how far the ...
03.04.2017
Hope
Hello can we really have confidence in medicine? Must we really believe that one day cystic fibrosis will be cured? Is a treatment for Class 5 mutations underway? Best regards.
17.03.2017
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