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Type: Posts; User: Imogene

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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...
  5. 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...
  9. 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 ...
  13. 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...
  17. Thread: Altitude Tent?

    by Imogene
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    Altitude Tent?

    This in from a Dad in Europe....

    Do you know about patients who sleep in an altitude tent? (http://altitudedream.com/en/) It clears the air and delivers more pure oxygen. It's expensive! Would...
  18. Wondering if this is available?

    Wondering if this is available?
  19. A Purdue University drug formulation incorporates...

    A Purdue University drug formulation incorporates two antibiotics to help fight the global crisis of antimicrobial resistance.
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    Eloxx Pharma and CF

    Eloxx Pharmaceuticals CEO Bob Ward is cognizant that one day, emerging science could usurp his company's approach to treating genetic diseases.
    While many biotechs are testing more experimental...
  21. Purdue University:New 2-in-1 powder aerosol to upgrade fight against deadly superbugs

    Purdue University researchers have developed a new approach to treating the fourth-leading cause of death worldwide – lower respiratory infections. Lung infections, often caused by...
  22. Deleting your on-line DNA is brutally difficult

    https://www.bloomberg.com/news/articles/2018-06-15/deleting-your-online-dna-data-is-brutally-difficult

    Companies who use your DNA should compensate you for it!

    This is what is happening with...
  23. Aridis Pharma: Convenient anti biotics dosing for CF patients!

    Aridis is a late-stage biopharmaceutical company focused on discovering and developing innovative anti-infectives, such as targeted immunotherapies using fully human monoclonal antibodies (mAbs) to...
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    Stella Grant (Haley Lu Richardson) is every bit a...

    Stella Grant (Haley Lu Richardson) is every bit a seventeen-year-old: she’s attached to her laptop and loves her best friends. But unlike most teenagers, she spends much of her time living in a...
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    I am back from a very successful trip to Glasgow...

    I am back from a very successful trip to Glasgow to speak at the ieee.org conference on Blockchain for Clinical Trials.
    Lots of positive feedback.
    I brought YOU the Patients and Caregivers. I...
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