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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....
  6. 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...
  8. 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.
    ...
  9. 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:...
  13. 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...
  14. 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.
    ...
  18. 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...
  19. A study to evaluate tezacaftor-ivacaftor(661) for those unable to tolerate Orkambi

    To be considered you must have-
    Prior discontinuation of Orkambi, with at least 1 respiratory sign or symptom considered related to therapy.
    Discontinuation of Orkambi therapy must have occurred <8...
  20. Hi Michelle- They’ll review Tezacaftor/Ivacaftor...

    Hi Michelle- They’ll review Tezacaftor/Ivacaftor (VX-661 studies) for those ages 12 years and older with DDF508 and those with one copy of DF508 and one copy of a mutation that is expected to have...
  21. Thread: Transplant time

    by jricci
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    Having never been through the process, I can't...

    Having never been through the process, I can't offer any words of wisdom, but please know that I'll be
    thinking of you and hoping that the call comes quickly and that the surgery and recovery go...
  22. Vertex Announces Acceptance of its Applications...

    Vertex Announces Acceptance of its Applications for Review of the Tezacaftor/Ivacaftor Combination Treatment in People with Cystic Fibrosis by the FDA and EMA

    -FDA grants Priority Review of the...
  23. Thread: Two Years Ago

    by jricci
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    This is such a beautiful reflection. I've had...

    This is such a beautiful reflection. I've had the exact same thoughts and feelings since taking my first dose of Kalydeco on November 6, 2014.
    Along with the happiness and renewed sense of hope...
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    I hope she does well with it. I remember how...

    I hope she does well with it. I remember how exciting that first dose was. I was so hopeful that it would work, but yet so worried that it wouldn’t-- lots of mixed emotions. I know you had concerns...
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    I thought I'd tag everyone in this tread to make...

    I thought I'd tag everyone in this tread to make sure they are aware of lastest Vertex press release:...
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