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    FDA back Manitol for CF!

    https://www.mdedge.com/chestphysician/article/200639/pulmonology/tight-vote-fda-panel-backs-mannitol-cf
  2. NEW SURVEY! Our Genomic Diaries! 24 participants so far!

    I am getting ready to present to the FDA next week.

    The topic is our Genomic Diaries: Provenance and Work Flow!

    Take the survey please:

    https://www.surveymonkey.com/r/WMT7JPG

    And $25.00...
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    Vertex Kaydeco for babies!

    FDA Approves KALYDECO® (ivacaftor) as First and Only CFTR Modulator to Treat Eligible Infants with CF as Early as Six Months of Agehttp://bit.ly/2GExCPa
  4. New Survey: Using an App for Research and Compensation

    New Survey: 131 participants so far! From:

    You come from:

    PA, Oregon, MA, Ohio , Nevada, Vermont, Indiana, California, NJ, Missouri, North Carolina, NY, Idaho, Mississippi, Tennessee,...
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    Thanks Jim Caldwell for the Forum UPgrade

    Hi All,

    It is always quite an endeavor to update our forums and we have had a few scares this week! As Jim tried to give us a new, more modern look. It turned out many of us just were fine with...
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    The Nuts of Bolt: a new book

    Thanks Sara and Dan Kominsky for telling us about your new book~


    Her lungs irreparably damaged after forty-six years of wrestling with Cystic fibrosis, Sara Kominsky chose to pursue a BOLT, or...
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    Pre-teen an inspiration

    https://lasentinel.net/pre-teen-cystic-fibrosis-patient-an-inspiration-to-others.html

    Thanks for sending this!
    Salt and Light,
    Jeanne:o
  8. 600 years’ supply of cystic fibrosis drug destroyed in price row

    Nearly 8,000 packs of Orkambi, the breakthrough medicine for cystic fibrosis, have been destroyed by the manufacturer while it has been in a stand-off with the NHS over the high price it wants to...
  9. https://www.theguardian.com/society/2019/mar/27/60...

    https://www.theguardian.com/society/2019/mar/27/600-years-supply-of-cystic-fibrosis-drug-destroyed-in-price-row
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    New Forum UPdate coming soon.

    Know that Jim Caldwell is working with VBulletin to upgrade our forums...I know many have been waiting a long time...(Me especially!)

    I'll keep you updated!
    Salt and light,
    Jeanne
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    Insurance question post transplant

    This question came in via email:
    If anyone has information...post it here...

    "I had a really important question regarding insurance

    for photopheresis for chronic rejection post transplant ...
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    Opening March 15th

    Opening March 15th
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    Vertex CEO hints at new ideas for the UK

    https://pharmaphorum.com/news/vertex-ceo-hints-at-new-ideas-to-bring-orkambi-to-uk-patients/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=0bbb30c03d-EMAIL_CAMPAIGN_2019_03_05_04_01_COPY_01&ut...
  14. UK politicians to grill Vertex on the price of drugs

    https://pharmaphorum.com/news/uk-politicians-to-grill-vertex-ceo-over-cf-price-drug-row/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=e37ce9a59c-EMAIL_CAMPAIGN_2019_03_05_04_01&utm_medium=ema...
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    New Book: My DNA Diary

    Dear Cystic Fibrosis.com


    My book "My DNA Diary: Cystic Fibrosis" is aimed at upper elementary level and beyond.
    It is a diary of exactly how DDF508 variant of Cystic Fibrosis is inherited,...
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    Wow~ A compliment from LittleLab warms my soul! ...

    Wow~ A compliment from LittleLab warms my soul! Thanks LittleLab. I am impressed with Ashish. He has a big goal...300 million people with identity by 2023!
    He now has 200,000 people on his...
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    Petition only for the uk

    Petition – will you sign it?
    Click this link to sign the petition:

    https://petition.parliament.uk/petit...BvAkdItIg9oIV5


    My petition:
    3-drug therapy Symdeko Cystic Fibrosis
    I have Cystic...
  18. Jeanne Barnett Interview in Pharmaphorum: The Blockchain Revolution!

    https://www.linkedin.com/feed/update/urn:li:activity:6506235636096208896/

    is on LinkedIn

    Or see it on:

    https://pharmaphorum.com/digital/talking-about-a-blockchain-revolution/

    Salt and...
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    Ashish Gadnis! Blockchain LEADER!

    Here is an article today that came out about Ashish Gadnis...my favorite Blockchain LEADER!

    http://online.publicationprinters.com/publication/?i=569401#{%22issue_id%22:569401,%22page%22:46}
    ...
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    Please reach out to the representatives and let...

    Please reach out to the representatives and let them know we are beginning our Blockchain Pilot: endeavoring to pay patients for their data!

    All of the blockchain caucus and their Twitter...
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    I reached out to Representative Eric Swalwell of...

    I reached out to Representative Eric Swalwell of California:
    Rep Swalwell! Very sorry to hear your daughter Cricket was in the hospital for arespiratory infection. We are a community with Cystic ...
  22. UK: Campaigners urge NHS to ignore patents on VERTEX CF drug

    The fight to get Vertex’s cystic fibrosis drug Orkambi available on England’s NHS continues, after pressure groups called on the government to implement a little-known law allowing to set aside ...
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    I was interested to learn there is a Blockchain...

    I was interested to learn there is a Blockchain Caucus in the US government.
    Are your Representatives involved?
    https://www.congressionalblockchaincaucus.com/

    Members:Congressman David...
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    Blockchain It's Working Ashish Gadnis

    I went to the Blockchain Conference at the Beth Israel Deaconess Hospital in Boston last Thursday, January 31.
    It was an elite group of scientists and I had the opportunity to present our survey...
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    Nebulizer Question...

    Do you know or have connections with http://www.akita-jet.com/ ? It should be a far better aerosol than our current one (the ones you have as well). The one we have is not able to deal with the 5...
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