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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 ensure that you receive it. It’s free! Please go to: www.cfroundtable.com or...

Novartis Patient Assistance (the makers of Tobi) might be able to help: https://www.patientassistancenow.com/ CFF Compass is another resource: https://www.cff.org/Assistance-Services/Insurance/Your-Insurance-Plan/Find-Resources-CF-Foundation-Compass/ On another note: I'm not sure what your...

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 grants wishes to both children and adults with CF that don’t have the financial means to pay for the...

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 confidential.

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 the Triple Combination of VX-659, Tezacaftor and Ivacaftor Met Primary Endpoint of Improvement in Lung...

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. Thanks!

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 and discuss topics such as Sibling Relationships, Living a Fulfilling Life with CF, New Diagnosis...

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 off-label. My mutation, R334W, still nowhere to be found in clinical trials despite it being one of the...

Enrolling soon :) I heard this study is expected to fill up quickly, so let your clinic know if you're interested...

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 cystic fibrosis (CF) who have one F508del mutation and one minimal function mutation. The study will...

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 Kalydeco for those with DF508+some residual function mutations. Not only a new tool, but an improved...

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 residual function mutations. It's from the 661-108 and 661-114 studies. If I remember right...

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: https://www.cff.org/CF-Community-Blog/Posts/2017/How-Theratyping-Will-Bring-Modulators-to-More-People-With-CF/ In this video, which is included in the blog...

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 around the Houston area so that supplies can be distributed to the children who need them...

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 families in the cystic fibrosis community who were affected by Hurricane Harvey. Our team will be...

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 participants who have two F508del mutations some will receive VX-445, ivacaftor and tezacaftor and others...

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 participants with two F508del mutations, some will receive VX-659, ivacaftor and tezacaftor and some will...

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. https://clinicaltrials.gov/ct2/show/NCT03140527?term=Proteostasis&cond=Cystic+Fibrosis&rank=2

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 blood sample. CFTR genotype will be confirmed and a repository of rare CFTR mutation specimens...

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 weeks from the first dose of Orkambi. FEV1 ≥25% and ≤90% of predicted normal for age, sex, and...