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Amber: I agree with Stephen! I think some of even remember the day back 10 years ago when we prayed really hard! You are a miracle! Salt and Light, Imogene

Thanks Autumn Great information. I called my congresspeople right away. This is an easy way to find your legislators: Make Friend with your legislators Salt and Light, Jeanne

You may want to check out this link...the Transplant Bible...it will give you lots of good information about the different transplant centers.

I am a founding member of this very interesting project where 2800 pharma marketers have joined in. The crux of the project is a Survey. I will help write the survey questions that will be going out to Pharma and to patients and caregivers...so you are not only invited to take the survey...

Need to let you know on the Clinical Trial front...that this week Feb 21 and 22, I was a presenter at the Data and Technology Clinical Trials Summit in Philadelphia. I was invited to speak because I am a founding member of the Aurora Project for pharmaceutical companies with the mission of...

This will probably help so many who come here looking for a diagnosis...be sure and read this: http://cysticfibrosis.com/new-guidelines-cf-diagnosis/

After this busy weekend, in the US, we all have to feel empowered to define how we want our country to go forward in so many important areas. This community has to care about healthcare. You probably voted, but now let your legislators know exactly how important health care is to you and all...

Francis Collins will remain head of the NIH in the new presidential administration! Salt and Light, Jeanne

Francis Collins stays on in the new administration! http://www.sciencemag.org/news/2017/01/trump-asks-nih-director-francis-collins-stay

Interesting! We have NEVER had a professional reply to our questions about nebs and cleaning...this is significant! Thanks PARI! Imogene

Vertex expected to do well in Europe this year: Vertex has given a downbeat sales forecast for 2017, saying negotiations with European health systems are dragging their heels on reimbursing its cystic fibrosis drugs. Nevertheless, analysts expect the company to be one of the top performing...

Hoping to get this post seen~ Sorry for the delay

It's only a matter of time before drugs are administered via patches with painless microneedles instead of unpleasant injections. But designers need to balance the need for flexible, comfortable-to-wear material with effective microneedle penetration of the skin. Swedish researchers say they...

Living With CF has a member (stylecomfy) blog post with a great organizing strategy...that helps with adherence! Enjoy... http://cysticfibrosis.com/treatment_box/ Salt and Light

There is a PCD Foundation and a website with information. I didn't see a forum...all are welcome to meet here. Salt and Light, Imogene

Teva Israel has signed a cooperation and marketing agreement with Israeli company Syqe Medical. Is the drug industry changing its approach to medical cannabis? This morning, Teva Pharmaceutical Industries Ltd. (NYSE: TEVA; TASE: TEVA)...

Here at CFTechnology.org/CysticFibrosis.com there are exciting things going on! I met Patrick Merle, PhD, in California at the Global Genes Summit. Patrick has developed an app with the CF patient in mind. A number of us have been piloting it, before we globally present it to you! There are...

Hi All: Please know that we are still working on restoring all the forum permissions to many of you! Jim Caldwell has spent many hours volunteering on this. Changing back to these forums...hasn't been an easy task. You can join back as new members in the mean time. For this, I am so sorry...

This is Reece's second lung transplant I think he had one at 7 or 8 years old...am I remembering correctly? So happy for the family! Let' s pray this one lasts for a long time. Salt and Light, Jeanne

Printer: May you be the FIRST to know on this BOARD that a very generous member has fixed our database...you, indeed have well over 2000 posts...I will figure out how to restore your info! Welcome HOME~!!