ataluren

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missT

Member
Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.
 
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henryb

New member
Hi there....just wanted to know if anyone in the phase 3 studies can comment on Ataluren and if there have been any reallly encouraging results so far. I am a father of 2 daughters with CF (R1162X+Delta F508)and live in Austria. We don't hear much about Ataluren in this country.
Any reply is appreciated!
Thanks!
 
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henryb

New member
Hi there....just wanted to know if anyone in the phase 3 studies can comment on Ataluren and if there have been any reallly encouraging results so far. I am a father of 2 daughters with CF (R1162X+Delta F508)and live in Austria. We don't hear much about Ataluren in this country.
Any reply is appreciated!
Thanks!
 
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Rebjane

Super Moderator
My daughter is W1282X and Delta F508. I think they are analyzing the data from the ataluren clinical trial. Hoping the information will be released soon; I wonder if it will be at the next CF conference in the fall or for the spring thoracic conference. No facts here; just wondering aloud.
 
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Rebjane

Super Moderator
My daughter is W1282X and Delta F508. I think they are analyzing the data from the ataluren clinical trial. Hoping the information will be released soon; I wonder if it will be at the next CF conference in the fall or for the spring thoracic conference. No facts here; just wondering aloud.
 
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Rebjane

Super Moderator
And also, thank you so much to those individuals who took time to participate in the trial. My daughter has had Cf progression these past years and we need something to intervene.
 
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Rebjane

Super Moderator
And also, thank you so much to those individuals who took time to participate in the trial. My daughter has had Cf progression these past years and we need something to intervene.
 
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missT

Member
Hi All, I am still in the study and I found out from another Ataluren CFer that the data should be out in 4-6 weeks. I hope this is true. I cant say that I have heard the same excitement as Kalydeco. That should say it all.
 
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missT

Member
Hi All, I am still in the study and I found out from another Ataluren CFer that the data should be out in 4-6 weeks. I hope this is true. I cant say that I have heard the same excitement as Kalydeco. That should say it all.
 
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Kaethe108

Guest
Yes, unfortunately it does not seem to be the "big hit" like Kalydeco...
But MissT, how do you feel since taking it? How did your health develop?
 
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Kaethe108

Guest
Yes, unfortunately it does not seem to be the "big hit" like Kalydeco...
But MissT, how do you feel since taking it? How did your health develop?
 
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missT

Member
I cannot say that anything is changed.....we really should wait for the data. Also, I am almost 42 with pretty severe lung damage. The data might be different for those who started with better Fev1's.
 
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missT

Member
I cannot say that anything is changed.....we really should wait for the data. Also, I am almost 42 with pretty severe lung damage. The data might be different for those who started with better Fev1's.
 
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Mathieua

Guest
Hannah08, can you give me more information about the pct124. My son (1 year) has y1092x and delta f508.
No clinical trial here yet in Belgium.

Best regards.
 
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Mathieua

Guest
Hannah08, can you give me more information about the pct124. My son (1 year) has y1092x and delta f508.
No clinical trial here yet in Belgium.

Best regards.
 
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