Topics

Splicing mutations
Do you know whether there are or there will be clinical trials on CF patients carrying a splicing mutation (other than stop-codons)? Additionally, can you tell me whether VX770 (for G551D mutations) and VX770/VX809 (for homozygous F508del mutations) will be further tested in patients with any kind ...
07.05.2013
MEVEOL® studies
Hello Few times ago I discovered the MEVEOL® program, performed by the pharmaceutical company ALAXIA. One publication has been done in 2009. On the ALAXIA’s web site we can noticed that: “ - MEVEOL® is a “candidate drug” effective for treating respiratory infection in cystic ...
03.05.2013
Future of gene therapy in CF
Hello. We don’t hear much talk any more about gene therapy and this treatment seems outdated ... Can you tell me a little more: what are the tracks to come in this area? Are there special difficulties to operate this way? Is this therapy still a hope for patients with cystic fibrosis? Thank ...
03.05.2013
Ataluren®
Hello I’ve read that the FDA has not approved Ataluren®. I want to know if there is still hope concerning this molecule. What is the goal of the open study? Best regards
03.05.2013
Phage therapy
Hello, I read your answers concerning the phage therapy, however, reading many articles and getting information in TV-shows [the concrete links are left out her as they were in French], we wonder if due to pharmaceutical lobbying that phage therapy is not used case-by-case. Indeed, only the ...
03.05.2013
NO (nitric oxide) Therapy
Hi! A friend informed me about a new therapy with nitric oxide, which seemed to be tested in Tübingen. Did you hear about it and is the therapy useful?
02.05.2013
KALYDECO®
KALYDECO® is beneficial for the mutation G551D and some other mutations causing the same problem. I read that the KALYDECO® would neutralize gastric acidity. Am I to understand that this positive effect would apply also to the G551D mutation (and similar mutations) or probably to all patients ...
26.03.2013
Kaleydeco® off-label
Dear expert team, in the USA Kaleydeco® (active substance Ivacaftor) is already used "off-label". Patients report about positive experiences in spite of the fact that there is not the so-called celtic mutation underlying. What are the chances that one can receive in Germany the drug for the ...
25.03.2013
Ataluren and ABPA
Hello, Firstly, I would like to know where is the third phase of the drug ataluren, and secondly whether this drug is effective against ABPA in CF patients, or only effective on congestion?
15.03.2013
phage therapy
Hello. I learned today about the existence of phage therapy. What about the study of this technique on anti-infective treatment (Pseudomonas) in CF? Is it a line of research to be taken seriously? Is it already proven or is it to forget? I’m a CF patient and nobody never talked to me about this ...
15.03.2013
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