Patients and advocacy groups take legal action against Trikafta patents in four countries
Activists are pressing governments in low- and middle-income countries to open up access to generic, more affordable versions of Trikafta/Kaftrio. […]
Cystic Fibrosis and Menopause
– Written by Aoife P. R. 28 and Menopausal Okay, so you’re probably wondering why I’m writing about this topic […]
Why People With CF Need to Know About HPV
– Written by Aoife P. R. My Experience with HPV + Cervical Cancer As some readers may know from my […]
Surviving Through the Pandemic Isolation in Ireland with CF
Saying Good-Bye to One Emotional Roller-coaster… January 2019. Fatigued, emotional, drained, fragile but eternally grateful, I was ready to take […]
Jillian needs a kidney! Type O
Meet Jillian McNultey, our latest Team Member! Jillian NEEDS a KIDNEY! Listen Here: THANK YOU to all those who like […]
Roche Virtual Summit Lauren Brenneman speaks Innovation and the CF community
Lauren Brenneman of CFTEchnology speaks about the mission of patients to take charge of their data at the Roche Virtual Summit Patient Panel
Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1
World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours […]
A New Hope for CF! (Planetary Biosciences Review – Jan 2018)
To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a […]
Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis
You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors […]
A letter from Dr Corey Nislow – the obligation to change the way research is done
Dear CF community, My name is Corey Nislow, I am a 51-year-old academic researcher who has spent the last 30 […]