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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 cover your experiences and current attitudes towards the condition, drug treatments and your...

UK public concerned about tech firms profiting from NHS...

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&utm_medium=email&utm_term=0_a54496134b-8b1c994496-431716241

https://investors.vrtx.com/news-releases/news-release-details/vertex-selects-triple-combination-regimen-vx-445-tezacaftor-and

https://kval.com/news/local/groundbreaking-research-for-cystic-fibrosis-on-brink-of-finding-universal-treatment Salt and Light, Imogene:o

https://www.mdedge.com/chestphysician/article/200639/pulmonology/tight-vote-fda-panel-backs-mannitol-cf

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 Gift cards to partipants: 25,50., 75 and 100! I will report back the results..as always~ Participants...

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

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, Wisconsin,Texas, Michigan, Iowa, ME, Florida,Ohio, Minnesota, Iowa, Michigan, Florida, Oregon,Virginia...

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 the forums the "way they are". Why is it so hard? Because there are over two million SAVED AND...

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 Bilateral Orthotopic Lung Transplant. This memoir, encompassing both emotional and physical...

https://lasentinel.net/pre-teen-cystic-fibrosis-patient-an-inspiration-to-others.html Thanks for sending this! Salt and Light, Jeanne:o

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 charge for the drug. The US company Vertex has distributed 80,000 packs of Orkambi around Europe...

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

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 And would love to hear their experience.".... Salt and Light, Imogene

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&utm_medium=email&utm_term=0_a54496134b-0bbb30c03d-431716241

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=email&utm_term=0_a54496134b-e37ce9a59c-431716241

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, what has gone wrong and why the body reacts as it does. It looks at the probably history of the...

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 Fibrosis myself age 40s.. Marketed as Symdeko. triple drugs.. Each day that passes more Cystic Fibrosis...

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 Light, Jeanne Barnett