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What exactly do you want them to do? They are doing a Kalydeco trial right now for DDF508. Two actually.

What exactly do you want them to do? They are doing a Kalydeco trial right now for DDF508. Two actually.

Doctors should not be writing the script according to the CFF if the patient does not have g551d. Can't get mad at the docs for saying no..... Heterozygotes are a completely different story---they have and do show benefit from Kalydeco even if they don't have g551d. The OP was discussing...

Doctors should not be writing the script according to the CFF if the patient does not have g551d. Can't get mad at the docs for saying no..... Heterozygotes are a completely different story---they have and do show benefit from Kalydeco even if they don't have g551d. The OP was discussing...

Emailed the pdf to individuals who requested it. Let me know if it you didn't get it. Gene modifiers CAN affect the course of CFTR. Its just that there has been no way to get this data broken down and collected to provide a case for DDF508s with these modifiers...

Emailed the pdf to individuals who requested it. Let me know if it you didn't get it. Gene modifiers CAN affect the course of CFTR. Its just that there has been no way to get this data broken down and collected to provide a case for DDF508s with these modifiers...

DDF508 did not respond to Kalydeco for the most part. Yes, there were a few individuals who may have had decreased sweat chloride, but the change in sweat chloride was NOT SUSTAINED through week 40 of the trial. Neither were the gains in fev1. I'm not saying don't try it, but don't be...

DDF508 did not respond to Kalydeco for the most part. Yes, there were a few individuals who may have had decreased sweat chloride, but the change in sweat chloride was NOT SUSTAINED through week 40 of the trial. Neither were the gains in fev1. I'm not saying don't try it, but don't be...

Thanks! I did read that the aspergillus is found in organic matter and grasses. could indicate a correlation with spring but who really knows......

Thanks! I did read that the aspergillus is found in organic matter and grasses. could indicate a correlation with spring but who really knows......

after transplant, what are some things that you can do that you couldn't do before? how has your life improved? would you do it again? do you feel like life is more fulfilling? do you feel more restricted or less restricted? thanks~!

after transplant, what are some things that you can do that you couldn't do before? how has your life improved? would you do it again? do you feel like life is more fulfilling? do you feel more restricted or less restricted? thanks~!

has anyone been treated for abpa? if so, was it at any one particular time of year-- like spring? this is my second time being treated for it and last year it happened to be the exact same time: April. i wonder if its coincidence. I don't really understand what it is or what causes it and the...

has anyone been treated for abpa? if so, was it at any one particular time of year-- like spring? this is my second time being treated for it and last year it happened to be the exact same time: April. i wonder if its coincidence. I don't really understand what it is or what causes it and the...

My parents live a mile away. I am married though so most of the burden of my health falls on my husband. However, I truly appreciate when my mom and dad can drive me to the hospital on a moments notice so my husband doesn't have to leave work. My mom brings me meals when I am doing home IV's as...

My parents live a mile away. I am married though so most of the burden of my health falls on my husband. However, I truly appreciate when my mom and dad can drive me to the hospital on a moments notice so my husband doesn't have to leave work. My mom brings me meals when I am doing home IV's as...

two interesting links that were posted on the fb site http://www.cdc.gov/genomics/gtesting/file/print/FBR/CFAnaVal.pdf http://www.acmg.net/Pages/ACMG_Activities/stds-2002/cf.htm for those who want to be re-tested you may want to show your doc

two interesting links that were posted on the fb site http://www.cdc.gov/genomics/gtesting/file/print/FBR/CFAnaVal.pdf http://www.acmg.net/Pages/ACMG_Activities/stds-2002/cf.htm for those who want to be re-tested you may want to show your doc