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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~!!

http://obamacarefacts.com/obamacare-news/

http://mobile.nytimes.com/2016/11/15/upshot/why-keeping-only-the-popular-parts-of-obamacare-wont-work.html

http://www.bbc.com/news/election-us-2016-37953528

From the BBC: US President-elect Donald Trump has said in an interview he is open to leaving intact key parts of President Barack Obama's healthcare bill. Mr Trump, who has pledged repeatedly to repeal the 2010 law, signalled he was receptive to a compromise after visiting the White House on...

important to keep updating.. New York Post

Link to Webinar from Cleveland Clinic

Here are 10 ways to help a friend during a difficult diagnosis: Helping

I know this isn't what anyone wants to read but it may be important: http://www.healthmark.info/CleaningVerification/SamplingKit/Gram_Negative_Bacteria_Outbreaks_June_2016.pdf

At the Summit, I met so many wonderful people dealing with rare diseases. Two of my "new friends" are Dr Susan and Lucy. Both of them have an autoimmune disease. They are inviting us all to their patient to patient conference in November. Of course for our community this doesn't work...

We are excited to share that you and your membership have the opportunity to help two exceptional students living with cystic fibrosis (CF) each win $24,000 scholarships to assist them in achieving their dreams of pursuing higher education. Earlier this year, AbbVie awarded 40 $3,000...

I am back from the Summit and just reviewing so many of the important things happening in the Patient Space....finally! Patients with rare diseases...orphan diseases like CF (less than 200,000 patients) are now on the forefront of healthcare...so important for research! There are more than 7000...

A successful gene therapy approach would have the advantages of treating all forms of CF regardless of the genetic mutation, and potentially the therapy could be given just once to effect a permanent treatment. Read more about the research...

HERE IS A GOOD LINK TO A CONVERSATION OF A CF DIET: http://forums.cysticfibrosis.com/showthread.php/135960-The-risks-of-cystic-fibrosis-diet

This app comes from the EU.. http://www.mycyfapp.eu/en/

U.S. Food and Drug Administration Approves ORKAMBI® (lumacaftor/ivacaftor) for Use in Children with Cystic Fibrosis Ages 6 through 11 who have Two Copies of the F508del Mutation -Approximately 2,400 children ages 6 through 11...

http://cysticfibrosis.com/distinguishing-relapse-from-reinfection-in-mac/

Emily of Emily's Entourage won the patient award here at global genes yesterday. emily has a nonsense mutation and has raised over 2 million dollars for research.

Yesterday was packed full. Many people/researchers/companies want to meet you, are here for you and you can live stream: https://globalgenes.org/raredaily/

fyi We are hoping to work with a special set of caregivers for a project involving AI....more info to come...