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Hi Tamara, congratulations with your new granddaughter! What a blessing. And welcome to our forums where I am certain you will find a lot of hope and support. We have a wonderful community that is very supportive and ready to help you in your search for knowledge on CF. I see you where able to...

This caught my interest. Here is the manual on BREO ELLIPTA for those interested: https://www.gsksource.com/gskprm/htdocs/documents/BREO-ELLIPTA-PI-MG.PDF

Just came across this: Read full article here.

Media coverage on Kalydeco yesterday (8 Aug 2014). Watch the coverage at wcti12.com

It's not often you see LittleLab4CF make a mistake...one for my bookmarks ;)

A must read community discussion for those suffering from CF like symptoms: http://forum.cysticfibrosis.com/threads/101056-Late-mild-diagnosis

I must say I am touched by the level of "quality information" and open sharing on this community thread. Its such a beautiful demonstration of the power of this community to connect and educate each other. If only more people like jenny123 could be exposed to information like this. This...

Very promising news out today on at "cystic fibrosis news today" summing up the importance of the recent Vertex combination therapy trials with lumacaftor and ivacaftor (Kalydeco) in patients with cystic fibrosis of the F508del-CFTR mutation. As they noted in a recent post, lumacaftor is a...

Some promising news from European Cystic Fibrosis Society (ECFS) president and Cystic Fibrosis Trust professor Stuart Elborn: Kalydeco (Ivacaftor) is the first drug treatment that not only treats the symptoms, but also the underlying causes of CF, and is currently approved for patients with...

A nice video for those wanting to learn about KALYDECO, its mechanism of action, treatment considerations and the its potential side effects. Note that kalydeco is now also being tested with other mutations.... https://www.youtube.com/watch?v=AHJ5ZroGhKk

The Manifestations of Cystic Fibrosis in the Human Body. I found this info-graphic quite comprehensive and a reminder of how complex this disease really is. If anyone notices anything missing in this info-graphic feel free to share! Image Source

Vertex Pharmaceuticals announced this week that the European Commission has approved KALYDECO (ivacaftor) for people with cystic fibrosis ages 6 and older who have at least one copy of the G551D mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene... The EU has...

Thanks for sharing. Very informative. I am going to share with some colleges.

Hi Laura, welcome to CysticFibrosis.com! Sounds very interesting. We will investigate this medication further. Can you share this on the forums? A lot of members access the website via mobile devices where the forums are more prominent then blogs. I would suggest sharing this news in the forums...

Here are the 2 colleges I lost: Press release:http://aighd.org/media/medialibrary/2014/07/Statement__Joep_Lange_and_Jacqueline_van_Tongeren__English.pdf

Thanks Peter. One of my best friends emailed me today with this: If I had persued my HIV research...I may have very well been on that flight.

Thanks for the intro Jeanne! Its been an emotional day for me. I will give a more formal intro of myself soon. Looking forward to meeting and chatting with many members...have already met some wonderful people here. I hope to meet a lot more!

Have you looked for some local support groups and parents in the same situation you are with teenagers with CF? It might help to talk to others that are going through similar life experiences. Maybe you can find some in this community. Where are you located? PS. I am glad you found the forums...

Hi LL, I wish you lots of strength and courage through this! Have you read this publication that covers the procedure in detail? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799613/ …also take note of the references as they can lead you to interesting places. If you need full text access to...

Wldhrtd1, I just made some updates to the website. So you should be ok. Also all posts that were pending approval has been approved, so all messages should be available.