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why are there so many duplicate posts? I stopped reading these forums because it is really annoying. Am i the only ones seeing double posts? Is it being worked on?

Has anyone participated in an expanded access program? Is it true the dr has to be the one to initiate the request through the company? I thought that expanded access was a separate program that had to be approved by the fda and then physicians would provide the company with a list of names who...

who initiates the patient to begin the compassionate care program? the company in a formal request to the FDA or the physician sends a list of names to the company? thx!

I have about had it with CF Services Pharmacy. Their customer service reps are anything but competent. I have given them many chances and tried to be 'patient'. I would rather give my money or my insurance money to CF Svs Pharmacy. But their service is terrible. I am going to give up. What are...

I was wondering how much you were on and if your face was still swollen. I have not had a tx but have been on steroids 5 mg per day and I still feel like my face is huge. Does it ever go away or is it something to live with forever after tx?

<p style="line-height: 15pt;"><span style="font-family: 'Arial','sans-serif'; color: black;">Stanford University is offering free cystic fibrosis genotyping of the CFTR gene to eligible non-Caucasian, non-Hispanic CF patients. This clinical service is being funded by the CF Foundation (CFF), a...

If you participated in the CCP for Kalydeco, when did you start it? Thanks.

If you get your home IV/infusion services covered by MediCARE please tell me which part covers it? A,B,C or D I have been told that Medicare does not cover home infusion AT ALL. Thank you for your help!

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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...

after reading this post from Angie <a href="http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html">http://runsickboyrun.blogspot.com/2012/04/start-of-my-kalydeco-journey.html</a> i wonder how many people have been incorrectly genotyped back when they were doing throat swabs...

what is yourbeginning fev1 (before starting Kalydeco) and current fev1? thanks for sharing!

(this info may not be new to you but worthy for some who haven't seen it) Starting at slide 21 <a...

Does anyone have any info about the current possiblecorrector being tested outside of Vertex to go along with the Kalydeco? I think there were a few discussed at the conference and I believe that Viagra was one of the drugs that was currently being tested to work as acorrector with Kalydeco. Is...

There are people with a 'blogspot'. I can view their blog but I am trying to figure out how to email these people. How do you contact the person with a question? Anyone know?

I saw a report on the news that many hospitals have shortages on important drugs like sterioids and antibiotics. This is a result of increased regulations that the drug companies are being subjected to--i suppose Cayston is an example of this? Anyway, it said hospitals were being forced to...

I want to say thank youto those people who update their blog and continue to keep your fellow patients, family members and care-giversin the loop. I find it rather helpful when individuals have blogs and continue to update and share information oryour stories. Everyday or every week for that...

After speaking with TWO representatives from Vertex IN PERSON, they both confirmed that the 770/809 trials will be scrapped alltogether if the 661 is more beneficial. They have findings that 661 will most likely take over and replace the 770/809 combo. You may have already figured this out. But...

I am trying to collect data from those who experienced changes in the kalydeco trial who are homozygous Delta 508. Are there any of those patients on this site? If so, please report any findings you had while you were in the trial. (if you can) Thanks!