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    UK Urges Vertex to accept their "generous offer" for Orkambi funding

    From PharmaPhorum
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    CF Drug Funding in the UK Patients March!

    https://pharmaphorum.com/news/patients-call-for-end-to-two-year-row-over-cf-drug-funding/?utm_source=pharmaphorum+Daily+Newsletter+%28updated+at+17082017%29&utm_campaign=5a7853b85d-EMAIL_CAMPAIGN_2018_03_14_COPY_68&utm_medium=email&utm_term=0_a54496134b-5a7853b85d-431716241
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    New Questionnaire for our APP development. . What do you think is Valuable?

    We continue with a new Questionnaire. This one is to dig deeper into finding out what our community thinks is valuable in a new app! So far, 118 people have taken it. (It was sent out originally to all those who took the first survey.) Participant #25 and #50 each received a $25.00 gift card...
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    New Survey for our Care Givers from the UK! £70 for those who qualify

    This survey is only available to primary Caregivers of children with Cystic Fibrosis aged 12-24 months old and eligible for the medication “Kalydeco” (Ivacaftor). Caregivers of children with Cystic Fibrosis aged 2-5 years, currently taking “Kalydeco” (Ivacaftor). These will be conducted as...
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    What could BlockChain do for Healthcare?

    is a simple good read! https://medium.com/s/welcome-to-blockchain/what-could-blockchain-do-for-healthcare-59c17245448e This community is brilliant and responsible! It may be a great first model... Going there... Salt and Light, Imogene
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    transplant organs

    https://www.medpagetoday.com/blogs/themethodsman/72377?xid=nl_mpt_DHE_2018-04-17&eun=g109008d0r&pos=0&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202018-04-17&utm_term=Daily%20Headlines%20-%20Active%20User%20-%20180%20days
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    Seeking our friends in Ecuador

    If you are from Ecuador or know members with CF from Ecuador, please contact us at info@cysticfibrosis.com. This is for an exciting new project we will be describing soon! Salt and Light, Imogene
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    Radiolab bone marrow transplants

    Listened to this story last night...http://www.radiolab.org/story/match-made-in-marrow/ it was memorable. Data matters! Donors matter! We know this!
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    Cure E US

    http://cysticfibrosis.com/cure-e-us-2018/ Can this community lead the way for a change of all of healthcare? I think so! Happy New Year! Salt and Light, Jeanne
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    The Obligation to Change the Way Research is Done!

    Here is a blog from our partner: Corey Nislow PhD http://cysticfibrosis.com/letter-from-corey-nislow/ Corey believes (after meeting you and me) and being part of our survey...there is a CALL for Change in the way Research is Done! Happy New Year! Salt and Light, Jeanne
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    Blog: A young mom exploring Blockchain

    Read one of our latest blogs...and the interesting responses from Kate, Brook, and Imogene...help us explore this interesting technology. Why? It may be a new way to pay patients for their data and 90% of those taking our survey at www.cftechnology.org would like to be paid for their data...
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    Blockchain...a blog

    I posted a blog sent to me by a young mom with a child with a rare disease. We may need to explore the Blockchain technology as we move forward with an app that pays the patient for their data. Blockchain is powerful and secure but NOT GREEN as Kate points out in her comment. What do you...
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    New SHORT Pulmozyme Study (5 minutes) Gift Card $15.00

    If you are a resident of the US and a: Pulmozyme User please take a short survey (5 minutes) and receive a $15.00 Gift Card. Need 23: CF Patients: (18-29) or a Nee 37: Caregivers of a (5-17 year old with CF) Please email info@cysticfibrosis.com and we will send you the link. Salt and Light...
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    Survey#3 mHealth Attitudes is closed! THANK YOU

    Every single response matters! Yet, we are stronger with numbers...that is why if we are serious about an app where each person owns their own data and we can choose to share it for Discovery, Research and Profit...we need the MOST participants! So if you already took the survey...talk...
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    Take our Survey for Data Discovery, Research, and Profit...moving to 500 participants

    So far we have had 444 participants! The 500th participant will receive a $50.00 Gift Card! www.cftechnology.org to take the survey! We received many comments (at the end of the survey) and here they are: Thank you for helping improve the CF world! this survey...
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    Pulmozyme Survey Now Closed!

    Thanks everyone for your great response. Salt and Light, Imogene
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    Survey for NON Pulmozyme Users Now: $40.00 Gift Card!

    For those who ALREADY took the survey and the 9 still needed, Gazelle Global is offering a $40.00 Gift Card. We still need 9 more Non Pulmozyme Caregivers of children 5-17. Please email: info@cysticfibrosis.com for the correct link Thanks! Imogene
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    Thank you to all who took the Pulmozyme Survey!

    The gift cards will be sent as soon as they arrive! All categories will get a $40.00 Gift Card! Thank you! You were great... Salt and Light, Imogene
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    Pulmozyme survey needs 9 more!

    Category 3. Caregivers of those 5-17 year olds who have Never taken pulmozyme. $25.00 gift card for a 10-15 minute on line survey. thankyou! click the link when ready to proceed. http://survey.gazelleglobal.com/CF
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    Link for ACA Signup

    https://www.healthcare.gov/
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