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    Vertex available in the 🇬🇧

    https://pharmaphorum.com/news/breaking-news-nhs-signs-agreement-with-vertex-covering-all-cystic-fibrosis-drugs/?utm_source=pharmaphorum+Top+Stories&utm_campaign=0cb7677924-EMAIL_CAMPAIGN_2019_07_26_03...
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    UK nhs approves all vertex drugs!

    https://pharmaphorum.com/news/breaking-news-nhs-signs-agreement-with-vertex-covering-all-cystic-fibrosis-drugs/
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    Suggestions for managing CF in College

    http://cysticfibrosis.com/suggestions-help-manage-cystic-fibrosis-college/

    Aimee Laurence
  4. Scotland's cost regulator rejects Vertex CF Drugs

    https://pharmaphorum.com/news/scotlands-cost-regulator-rejects-vertex-cystic-fibrosis-drugs/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=4691e15288-EMAIL_CAMPAIGN_2019_07_25_12_41_COPY_01&ut...
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    So glad it may work out for DS! My younger ones...

    So glad it may work out for DS! My younger ones are enjoying it! They are creating characters for minecraft and doing some simple block programming. They are 6 and 9.

    Let us know if this works...
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    Thanks for the great suggestion Lance! As a Math...

    Thanks for the great suggestion Lance!
    As a Math and Computer Teacher and with 12 grandchildren, I am working with them (as young as 7 yrs old) on www.tynker.com. They love it and of course I love...
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    Yendry's Friend, I have some neb...

    Yendry's Friend,
    I have some neb equipment...please send your address and info to [email protected]

    Good luck finding the right meds!
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    Sticky: Thinking of you and your beautiful family. May...

    Thinking of you and your beautiful family. May these memories bless you!

    http://forums.cysticfibrosis.com/showthread.php/17569-Praying-for-Micah?highlight=Micah

    salt and light,
    imogene
  9. Vertex News: SYMDECKO approved for patients 6 years and older....

    -SYMDEKO is now approved for patients 6 years of age and older with two copies of the F508del mutation or one copy of a responsive mutation--Vertex's third medicine approved to treat the underlying...
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    Nasal Polyps Research

    Who Can Participate: People (18 years and older) who have been diagnosed with nasal polyps (United States only)

    Earn: $100.00

    What is it? A 60 minute telephone interview (with webcam). It will...
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    Profiting from Big Data in the UK

    UK public concerned about tech firms profiting from NHS...
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    CF parents start a buyers club in the UK

    https://pharmaphorum.com/news/orkambi-parents-start-buyers-club-to-import-generic-version-of-cf-drug/?utm_source=pharmaphorum+Daily+Newsletter&utm_campaign=8b1c994496-EMAIL_CAMPAIGN_2019_06_05_11_31&u...
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    Vertex: Triple combination~ Breaking News

    https://investors.vrtx.com/news-releases/news-release-details/vertex-selects-triple-combination-regimen-vx-445-tezacaftor-and
  14. There are 148 participants! A $25.00 gift...

    There are 148 participants!
    A $25.00 gift certificate to participant 150, 175, and 200!
    Participants are from:
    Every state except Wyoming!
    Countries: Canada, Philippines, Australia, South Africa...
  15. Groundbreaking Research for CF on brink of finding universal treatment!

    https://kval.com/news/local/groundbreaking-research-for-cystic-fibrosis-on-brink-of-finding-universal-treatment


    Salt and Light,
    Imogene:o
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    FDA back Manitol for CF!

    https://www.mdedge.com/chestphysician/article/200639/pulmonology/tight-vote-fda-panel-backs-mannitol-cf
  17. Data Provenance and Workflow Survey! Our Genomic Diaries! 148 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
  19. 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
  23. 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...
  24. 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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