What a great session at #NACFC2022 focused on value, equity, and social complexity in CF care. I was delighted to speak on how the CF community can work together to improve value based care! Cystic Fibrosis Foundation CF Learning Network

Dr. Kim Trieschman knocked it out of the park with her QI presentation on CF clinic-GI clinic care coordination. Important to use QI tools from Model for Improvement to plan and execute improvement processes! #NACFC2022 OHSU Doernbecher Children's Hospital CF Learning Network

Results from the six-week Simplify study found that people with #cysticfibrosis on Trikafta enrolled in the study could safely stop taking one of two common CF medications, hypertonic saline or dornase alfa, without negatively impacting their health. cff.org/news/2022-11/s…

Addressing the burden of #CF treatments post-ETI as network of clinicians, patients, families, and researchers! #realworldresearch #coproduction #NACFC

This #GivingTuesday your donation goes 2⃣✖ times as far! Your gift will be matched, dollar-for-dollar, up to $250,000 thanks to the generosity of the Stremick family. Make your gift now and help us get one step closer to making CF stand for Cure Found: on.cff.org/GivingTuesday2…

🚶‍♀️🏃‍♀️🚶 It’s Here! 🚶‍♀️🏃‍♀️🚶Registration is now open for the Walk To Make Cystic Fibrosis History! You can join us at a local Walk or virtually. Plus! Stay tuned for our exciting Early Bird contest starting Feb 1! Help us go #FurtherForAll. bit.ly/3ZVs6zH

This #WeShareWednesday is Discussions about Emotional Health from The Roadmap Project! This video outlines the “Normalize, Ask, Pause” technique for providers starting discussions about emotional health with patients and families. View this resource: youtube.com/watch?v=5vGpPO…

While this conference is closed to the public, we are pleased to announce that we will be LIVE tweeting the event! Meet us right here on Twitter from 8a to 4p on March 2 to join in on the excitement as we all teach and all learn together. #ImprovingChildHealth

The U.S. FDA approved Trikafta for children with CF ages 2-5 years with at least one copy of the F508del mutation or one copy of certain mutations. With this approval, more than 900 children will have access to a CFTR modulator for the first time. cff.org/news/2023-04/t…

May is Cystic Fibrosis Awareness Month!

“This is the youngest population ever to be approved for a modulator, and we believe that it could help transform the trajectory of their disease and reduce the need for future chronic therapies.” JP Clancy, MD, senior vice president of clinical research Cystic Fibrosis Foundation

Cystic fibrosis is a progressive, genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene. #CFAwarenessMonth

Our vision is a cure for cystic fibrosis, and with every walk and step we take, we get closer to that goal. Thank you for joining us at #GreatStrides this month across the country during #CFAwarenessMonth!

Congratulations to everyone in the #cysticfibrosis community who are a part of the 2023 graduating class! Whether you are graduating from kindergarten, high school, trade school, college, or beyond, we are proud to celebrate your achievement.

Francis Collins, lead scientist on the Human Genome Project and Former Director of the National Institutes of Health, joins Don and Kedar for this weeks episode of "Turn on the Lights" podcast. Listen and subscribe on your platform of choice! bit.ly/3Jb5LYa

Great kick off to the CF Learning Network Community Conference CF Learning Network with a Network Leadership Retreat. Great prep work related to concepts how a learning health network can impact issues of mental health, modulators, and new models of care. Great discussion and multi-votes!

So proud of my colleagues at the CF programs Boston Children's and Brigham and Women's Hospital on their ongoing work to support CF care in Jordan. Big thanks to Cystic Fibrosis Foundation and MECFA for supporting these efforts!

onlinelibrary.wiley.com/share/9IIJ9UN8… Congrats and kudos to Michael Seid @KSabadosa Erin Moore breckgamel karenzeribi and the whole CF Learning Network

Such great community building and sharing at Evolving Models of Care Session #NACFC2023. Wonderful Opportunity for CF Learning Network Leadership Team of clinicians, parents, patients, QI specialist, CFF leadership to meet in person, providing a sense of Shared Purpose and Belonging❤️👏🏻🌵

So excited to launch PRIDE-CF, a national study examining the health care experiences of LGBTQIA+ people with CF! Thanks to the Cystic Fibrosis Foundation for funding this important work!