Topics

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
Prescription of Orkambi® not possible in Ireland
Hallo, my boss in Ireland is a father of a 15-year-old girl with CF. Unfortunately Orkambi® is not licensed in Ireland. Is there a possiblity to get it in Germany for her? What does he has to do to get it? Is private insurance enough or do you have to live in Germany, paying a german health ...
17.03.2017
Unlisted mutation: Research and treatment
Hello, We just learned the diagnosis of our baby. It has a mutation that is not listed. Will this affect his future treatment? In short, will it be less well treated than a patient with the delta 508 mutation for example? Cordially.
24.02.2017
RNA Therapy
Hello, There is gene therapy, protein therapy and now RNA Therapy. What is it about ? And above all, would positive results in RNA therapy address all patients (such as gene therapy) or would it depend on mutations (such as protein therapy)? Thank you in advance for your answer.
20.01.2017
Ataluren and research
Hello, Some time ago I asked a question concerning Ataluren on this platform. Our two daughters (28 and 31) have the genotype Delta F508 and R1162X. Our CF physician mentioned at the last control, that recently quite promising results have been reported for Ataluren at a CF congress in London. ...
05.12.2016
New curcuma preparation
Hello, As far as I know, the effect of curcuma on CF is tested in the Netherlands in clinical studies. Now I have read, that a new preparation is going to be put on the market, that should guarantee a high bio-availability of curcuma and therefore should be especially suitable for CF ...
12.10.2016
Lactoferrin
Hello, are there treatments or research regarding the use of lactoferrin as a bactericidal substance in cystic fibrosis?
19.09.2016
Research Update
Hello, Could we have a French synopsis on positive results regarding research (Vertex, QR-010, PTC124, others?) for patient heterozygous for the F508del mutation? Thank you.
19.09.2016
Quinsair®
Hello, could I get some information about Quinsair® (inhalation of levofloxacin)? Since when it is on the market, how, where and when is can/should be used? Best regards,
25.07.2016
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