Search:

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...

https://pharmaphorum.com/news/breaking-news-nhs-signs-agreement-with-vertex-covering-all-cystic-fibrosis-drugs/

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

Aimee Laurence

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...

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...

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...

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

Good luck finding the right meds!

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

-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...

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...

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&u...

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

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...

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...

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,...

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...

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...

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...

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

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