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    When they have the 24 week data in, they'll...

    When they have the 24 week data in, they'll choose which triple they’re going to submit for new drug application. Sounds like it will be sometime in third quarter of 2019. FDA will hopefully accept...
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    I might not have this right, but I’ve been given...

    I might not have this right, but I’ve been given the impression that Vertex will attempt to get triple combo approved for anyone with at least one df508 mutation, even if their other mutation wasn’t...
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    Phase 3 results for VX-445 triple combo

    Very exciting results announced today for VX-445 :)
    Sounds like they'll review more data at end of 24 weeks and decide between VX-659 and VX-445

    From Vertex press release on 3/6:...
  4. https://www.foundcare.com/Patients/everyday-specia...

    https://www.foundcare.com/Patients/everyday-specials.html
    I now have to use Accredo for Cayston, but used to get it filled through Foundation Care and got hypertonic saline for free for years, so I...
  5. Thread: New

    by jricci
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    Hi Matthew. Sorry to hear you're feeling alone....

    Hi Matthew. Sorry to hear you're feeling alone. CF can be such an isolating disease. There's a CF discord where you'll be able to connect with others with CF that can relate to what you're feeling. ...
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    Hi Kenna, Sorry to hear about the hemoptysis....

    Hi Kenna,
    Sorry to hear about the hemoptysis. I’m not sure if you have the space or the budget for this, but thought walking on a treadmill might be an option. Walking at a slow pace for longer...
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    CF Roundtable Newsletter

    For those who don't already subscribe to the CF Roundtable newsletter:

    The special winter CF Roundtable® issue on Organ Transplantation in CF will be out soon.

    Subscribe by January 26th to...
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    Novartis Patient Assistance (the makers of Tobi)...

    Novartis Patient Assistance (the makers of Tobi) might be able to help:
    https://www.patientassistancenow.com/

    CFF Compass is another resource:...
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    I’m so sorry to hear of your boyfriend’s relapse...

    I’m so sorry to hear of your boyfriend’s relapse of pancreatic cancer. It sounds like a perfect idea to plan a relaxing trip for him.

    Take a Breather Foundation is a wonderful organization that...
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    Beth Sufian is Director of the CF Legal...

    Beth Sufian is Director of the CF Legal Information Hotline. She was the lawyer interviewed in the article/video clip.

    CF Legal Information Hotline

    1-800-622-0385. All contacts are free and...
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    Phase 3 results for VX-659 triple combo

    I'm guessing most have seen this already, but thought I'd share in case you missed it:

    Incredible Phase 3 results for VX-659!!!:)

    From Vertex Press Release on 11/27:

    Two Phase 3 Studies of...
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    Hi Shay- I just sent you a pm. I know this is...

    Hi Shay-
    I just sent you a pm.
    I know this is an old thread, but saw that you’re still active on the forum.
    I was hoping you could give me some feedback on your daughter’s experience with UPENN....
  13. Event for those with CF and their Family Members

    The CFF is hosting a virtual event for those with CF and their caregivers on Sunday, June 3, from 4-9:30 p.m. ET. There will be keynote speakers and small breakout sessions to connect with others...
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    Wow- This is such wonderful news stephen! I'm so...

    Wow- This is such wonderful news stephen! I'm so happy for you. Just in time for your trip. Sounds like those hills of Jerusalem will be smoothed out a bit.:)

    I'm still taking Kalydeco...
  15. Phase 3 study of VX-659 triple combination drug

    Enrolling soon :) I heard this study is expected to fill up quickly, so let your clinic know if you're interested.
    ...
  16. Vertex Initiates First Phase 3 Study of VX-659, Tezacaftor and Ivacaftor

    From VRTX.com:

    February 21, 2018

    Vertex announced the initiation of the first Phase 3 study of VX-659, tezacaftor and ivacaftor as an investigational triple combination regimen for people with...
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    Absolutely :) I think it will be a game changer...

    Absolutely :)
    I think it will be a game changer for many--especially those with DDF508 that weren’t able to tolerate Orkambi’s side-effects.
    It was also shown to be more effective compared to...
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    ToriMom- The drug this news article is...

    ToriMom-

    The drug this news article is referring to isn't the triple combo. This new drug (Smydeko) will treat those with DDF508 and it will also treat heterzygotes that have one DF508 plus select...
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    Encouraging story for those with A445E

    Knobby-
    I read the CFF blog post today, which gave a summary of the first plenary at the NACFC:...
  20. Help send supplies to children who are medically complex impacted by Hurricane Harvey

    Opportunity to put your unused IV supplies, G-tube, extra neb cups, etc. to good use:

    We are collecting pediatric medical supplies and are connecting with local families and organizations in and...
  21. Hurricane Harvey's Cystic Fibrosis Victims Relief Fund- Boomer Esiason Foundation

    From Boomer Esiason Foundation:
    In light of the recent events in the Gulf Coast region, we here at the Boomer Esiason Foundation are raising funds that will directly impact the lives of those...
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    Phase 1/2 study of VX-445 combination drug

    In participants 18 years and older who have one F508del mutation and one minimal function mutation, some will receive VX-445, ivacaftor and tezacaftor, and others will receive placebo.

    In...
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    Phase 2 study of VX-659 combination drug

    In participants 18 years or older who have one F508del mutation and one minimal function mutation, some will receive VX-659, ivacaftor and tezacaftor, and some will receive placebo.

    In...
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    Phase 1/2 study of Proteostasis PTI-801-01

    This study is for people 18 years or older who have two copies of the F508del CFTR mutation and have been taking lumacaftor/ivacaftor for at least three months.
    ...
  25. Rare mutation cell collection for those with 2 nonsense mutations

    https://www.clinicaltrials.gov/ct2/show/NCT03161808?term=Rare+Cell+Collection&cond=Cystic+Fibrosis&rank=1

    This study will consist of a single visit where researchers will collect nasal cells and a...
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