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Ok...let's clear the smoke a bit and look at what the rest of of us who aren't so smart can do about this problem. First, I signed up with Open Congress, and I sent the letter supporting the current bill. Second...what do you all suggest? Call Vertex? Call my CF Clinic? Sit around and do...

Ok...let's clear the smoke a bit and look at what the rest of of us who aren't so smart can do about this problem. First, I signed up with Open Congress, and I sent the letter supporting the current bill. Second...what do you all suggest? Call Vertex? Call my CF Clinic? Sit around and do...

It's good to know that my daughter's CF doctor/team have been on the right track! For the past 4 years he has refused to put her in the hospital, tending, instead, toward oral antibiotics and home treatments. We are grateful. Recently we added something new to her routine--the Neil Med. sinus...

It's good to know that my daughter's CF doctor/team have been on the right track! For the past 4 years he has refused to put her in the hospital, tending, instead, toward oral antibiotics and home treatments. We are grateful. Recently we added something new to her routine--the Neil Med. sinus...

Great job of researching! Thanks! Question: is it true that each pill costs $1000. apiece? Any word on actual cost? Next question: has anyone done any journalistic investigation of these pharmaceutical companies to see WHY our medications cost outrageous amounts?! This kind of investigation...

Great job of researching! Thanks! Question: is it true that each pill costs $1000. apiece? Any word on actual cost? Next question: has anyone done any journalistic investigation of these pharmaceutical companies to see WHY our medications cost outrageous amounts?! This kind of investigation...

Does anyone have any practical suggestions for working together as a group to put pressure on the CFF to allow Kalydeco trials for more than just a handful of CF'ers? Isn't it time we ALL banded together and made our collective voices heard?! How long will each one of us struggle against the...

Does anyone have any practical suggestions for working together as a group to put pressure on the CFF to allow Kalydeco trials for more than just a handful of CF'ers? Isn't it time we ALL banded together and made our collective voices heard?! How long will each one of us struggle against the...

Is there anyone taking Kalydeco who has Df508 double gene? If so, please tell me how you obtained it. Thanks you!

Is there anyone taking Kalydeco who has Df508 double gene? If so, please tell me how you obtained it. Thanks you!

Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? I've been told by our CF doctor that it is NOT available for my daughter right now. Two years of waiting. But like most of you I would move heaven...

Ok, is this drug available to those who just happen to have doctors who are willing and insurance that is willing? Is anyone with DF508 taking this? I've been told by our CF doctor that it is NOT available for my daughter right now. Two years of waiting. But like most of you I would move heaven...

Yes, I believe she is double DF508.

Yes, I believe she is double DF508.

Marci, I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more...

Marci, I am new to the forum, and very intrigued by your experience with Kalydeco. My daughter, 16, Joy, just saw her CF Team last week and we talked with her Dr. about Kalydeco. Joy has Delta F508. Her doctor said that the medicine would NOT be available until approved by the FDA/or more...