The latest information for June 10, 2021


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Thursday, June 10, 2021

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Register for a Community Webinar

We are thrilled to announce that yesterday the FDA approved Trikafta® for children ages 6 – 11 ([link removed]) with one F508del mutation and other certain mutations. This is great news for CF families that may now benefit from the transformative effects of a highly-effective modulator. Parents and caregivers of children with CF are invited to join us for a community webinar today ([link removed]), Thursday, June 10 at 7 p.m. ET to have your questions answered by experts from the CF Foundation. All those who register will receive a recording of the event.  Save your spot » ([link removed])

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Cystic Fibrosis Foundation
4550 Montgomery Ave, Suite 1100N
Bethesda, Maryland 20814

www.cff.org ([link removed])

New Study Tracks Real-Life Experience With Trikafta Through Your Smartphone

Last week, we announced the HERO-2: Home Reported Outcomes Study ([link removed]), a first-of-its-kind, at-home observational study that aims to look at the outcomes people experience while using Trikafta®. The study will track the health of individuals with CF and any changes they make to their daily therapies while on Trikafta through self-reported updates on a smartphone app. Learn more about HERO-2 » ([link removed])

The HERO-2 study is being conducted by Indiana University with funding from the Cystic Fibrosis Foundation. The app powering the study was developed by digital health company Folia Health, and the data will be linked to the CF Foundation’s Patient Registry, a robust database that informs research and care of CF.

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Returning to In-Person CF Clinic

As more of the country is fully vaccinated and transmission rates are declining, cystic fibrosis care teams are ready to provide specialized CF care in person, having long understood the importance of infection protection and control measures ([link removed]). Now is a good time to catch up on pulmonary function tests, sputum cultures, and blood tests, including those needed prior to refilling prescriptions, like Trikafta. If you’re still worried about the risk of an in-person clinic visit, ask your CF care team what they’re doing so you can safely return. Find your CF care center » ([link removed])

Impact Cystic Fibrosis Research and Care by Joining Community Voice

As CF virtual care and telehealth appointments become more common, we want to learn how we can improve the experience and expand this new technology to include research studies. If you or your loved one has cystic fibrosis, join Community Voice ([link removed]) for the chance to virtually share your unique experiences, perspectives, and knowledge to impact CF research, care, and programs including telehealth and virtual studies. Sign up for Community Voice » ([link removed])

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The Latest Books and Music From People with CF

This month on the CF Community Blog, we’re highlighting six works created by people living with cystic fibrosis and their loved ones ([link removed]). Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF. Read the blog » ([link removed])





4550 Montgomery Avenue, Suite 1100N | Bethesda, MD 20814 US

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