Kalydeco

J

Jellybaby

New member
Hey guys,
Wondering if any of you know about kalydeco for ddf508 patients.
Iv read so many things about when its coming, that it isn't happening, that it wont work and its hard to know what to believe! :(
I hear of so many people on it and are doing amazing, I just need it so bad now and hope its available to people like me soon :'(
I know its kalydeco combined with some other drug for people with ddf508 but do any of you know what stages the research is at for people like me?
Any help would be greatly appreciated!
Thanks so much :)
 
R

rosesixtyfive

New member
I'm sure there are others who can tell you more than I can, but, I heard it is working for ddf508 patients. It is in a stage III clinical trial which is the last trial before going on the market, and that it should be out by 2015. Did I get it right everyone? Thanks, rosesixtyfive, mother of Sam, ddf508, 3 years old
 
G

GenH

New member
Jellybaby said:
Hey guys,
Wondering if any of you know about kalydeco for ddf508 patients.
Iv read so many things about when its coming, that it isn't happening, that it wont work and its hard to know what to believe! :(
I hear of so many people on it and are doing amazing, I just need it so bad now and hope its available to people like me soon :'(
I know its kalydeco combined with some other drug for people with ddf508 but do any of you know what stages the research is at for people like me?
Any help would be greatly appreciated!
Thanks so much :)
Click to expand...

Hi Jellybaby, if you are on facebook there is a group where meds for F508del get discussed in depth, https://www.facebook.com/groups/153375788050316/

I have also added some info here about F508del meds http://sixtyfiverosesblog.wordpress.com/future-medications/ and I just started a topic about the latest F508del data here http://forum.cysticfibrosis.com/threads/55111-Latest-Vertex-News-New-data-for-F508del-and-G551D

Hope this helps :)

Gen
 
K

kmhbeauty

New member
I am wondering the same thing, about cost. I am also wondering how it is going to work for insurance. I do not currently have insurance but I have Medi-cal through the state.
 
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