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Thanks for sharing! I did make a blog on the news when it hit the wires. http://forum.cysticfibrosis.com/entries/393-Median-age-of-survival-for-CFers-surpasses-50-years-of-age!
Good to see followup data...I will investigate further. This is important. Canada is doing something right!
Sorry to hear this. Hope she gets well soon! Just a quick message to say that you will get more discussion posting this in the forums under Adult or families. You have made a blog post here and blogs are not a place really for discussions like the forums are. You will get more attention and...
FYI...I shared this on the CF facebook page and there is also some advice and a discussion taking place there.
See: https://www.facebook.com/knowcf/posts/10152964474168777
Big News today from the Cystic Fibrosis Foundation who just sold its drug royalty rights for $3.3 Billion to Royalty Pharma. The CFF plans to reinvest the money into new research efforts. “These new funds give us a tremendous opportunity to supercharge our efforts to develop lifesaving new...
Electronic patch technology is rapidly gaining momentum in the medical device research arena. By analyzing sweat, an electronic patch maybe able to diagnose cystic fibrosis and may one day be used for monitoring blood glucose levels for diagnosis and treatment of diabetes.
The new patch-type...
Kalydeco just got approved to be added to the list of the Pharmaceutical Benefits Scheme (PBS) in Australia, and will become available on December 1st 2014, as announced by Australian Health Minister Pete Dutton. This means that the costs of Kalydeco will be subsidized by the Australian...
A very interesting and potentially significant study was published by a french group at the Institute Pasteur demonstrating how a bacterium manipulates its host to eradicate an opponent. They showed that a particular enzyme produced by the airways of cystic fibrosis patients is instrumental in...
Thank you for pointing this out! Yes, this is pre-FDA approval. This was a critical hurdle in the in the FDA approval process. Are there other hurdles before final FDA approval?
The Pulmonary-Allergy Drugs Advisory Committee (Ad Comm) votes 13 - 2 in favor of a label expansion for Vertex Pharmaceuticals' cystic fibrosis med Kalydeco (ivacaftor) to include the R117H mutation. This expands the approved CF mutation list to ten. (PR source: http://t.co/514NrU3K9Q )
There...
Researchers at UC Ivine have developed a low-cost, disposable breath analysis nanotechnology device for people with cystic fibrosis. The device sends data to a smartphone in the event of a lung infection. The device can detect tiny quantities of infection in a small sample of breath. The device...
Hi Gorf, yes, you are right! The Canadian CFF released a median life expectancy for CFers. Not sure how the number was generated but I will look for data on this and report. You are right and there are many genetic predispositions to CF that can skew this number a lot. That's why it is so...
An interesting study performed at the Vanderbilt University demonstrated the ability of bacteria, in this case Staphylococcus aureus, to work together in a mixed population, collectively sharing nutrients to resist drugs like antibiotics.
There are many ways bacteria can develop resistance to...
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