CF Learning Network

We are a group of people living w/#CF, clinicians, & researchers working collaboratively to improve the health & quality of life for those w/#CF. @CF_Foundation

[Gregory Sawicki MD MPH 👨‍⚕️🌈 @GregSawickiMD]

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

[Mike Powers @pedspulmmike]

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

[CF Learning Network @TheCFLN]

@georgedellal @michaelseid11 @KSabadosa @ekeeleymoore @breckgamel @karenzeribi Thank you @georgedellal @karenzeribi @LearningNetwrks Grateful for your contributions and partnership in our journey! #CFQI

[George Dellal @georgedellal]

https://t.co/lqACUjsBje Congrats and kudos to @michaelseid11 @KSabadosa @ekeeleymoore @breckgamel @karenzeribi and the whole @TheCFLN

[Gregory Sawicki MD MPH 👨‍⚕️🌈 @GregSawickiMD]

So proud of my colleagues at the CF programs @BostonChildrens and @BrighamWomens on their ongoing work to support CF care in Jordan. Big thanks to @CF_Foundation and @mecfassoc for supporting these efforts!

[CF Learning Network @TheCFLN]

@pedspulmmike The energy and passion of this community to improve and innovate is remarkable. #CFQI #SummerCC23 @CF_Foundation @LearningNetwrks

[Mike Powers @pedspulmmike]

Great kick off to the CF Learning Network Community Conference @TheCFLN 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!

[Institute for Healthcare Improvement (IHI) @TheIHI]

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! https://t.co/ti2mXWMlrl

[Cystic Fibrosis Foundation @CF_Foundation]

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.

[Cystic Fibrosis Foundation @CF_Foundation]

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!

[Cystic Fibrosis Foundation @CF_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

[CF Learning Network @TheCFLN]

“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 @CF_Foundation

[Cystic Fibrosis Foundation @CF_Foundation]

The @US_FDA has approved Kalydeco for infants with cystic fibrosis ages 1-4 months who have certain mutations. Research indicates that early intervention with modulators can help slow or even prevent the irreversible progression of this disease. https://t.co/2VwPmx0WjN

[Cystic Fibrosis Foundation @CF_Foundation]

May is Cystic Fibrosis Awareness Month!

[Cystic Fibrosis Foundation @CF_Foundation]

The @US_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. https://t.co/n7dD8XA8KC

[Learning Health Networks @LearningNetwrks]

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

[Cystic Fibrosis Foundation @CF_Foundation]

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: https://t.co/pk9M8jX5FB

[Cystic Fibrosis Foundation @CF_Foundation]

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. https://t.co/MNzKGeSSqb

[CF Learning Network @TheCFLN]

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