Highlights from our latest Spring issue of Network News include:
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Partnerships for Sustaining Daily Care Communications Pilot: Encouraging open discussions on daily care
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Community Partnerships: Updates on how the perspectives of people with CF and their families are being used to build a community
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Ensuring Access to Care: How the Policy Team is working to secure appropriate coverage for lumacaftor/ivacaftor (Orkambi®)
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Advocacy Days: Galvanizing volunteers and care teams to advocate for access to care and treatment in New York, Massachusetts, Florida and Pennsylvania
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Partnerships Between CF Care Teams: Using Registry data to examine transitions between different care centers
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Tenth Annual CF Nutrition and Social Work Consortium: An annual gathering to share the work and celebrate the impact made in the CF community
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Clinical Care Guidelines Update: Status on guidelines in development and implementation support for guidelines on depression and anxiety
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CF Foundation Compass: Personalized service that helps your patients with insurance, financial, legal and other issues that can stand in the way of accessing care
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Thank You Care Centers: Acknowledgement of care team participation in Great Strides walks and an introduction to a new educational blog on nutrition
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The Patient and Family Experience of Care Survey: Learn how to access your care center's results online
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Learning and Leadership Collaborative: Read about the OneCF Center and Fundamentals LLCs' benchmarking site visit in Boston, which included QI presentations on coproduction of health care services and innovation
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In Memorium: Acknowledging the contributions of Carolyn Denning, M.D., and Warren Warrick, M.D., two champions in the CF community
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New Clinical Trial Tools: Coming July 27, new digital tools will help you and your patients find ongoing studies across the country
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CFF.org Content:
Reproductive Health and Fertility: Helping your patients understand how CF affects their reproductive health, including sensitive topics like sex and intimacy
The Spring 2016 quarterly newsletter of the CF Foundation’s care center and clinical research networks includes key news and highlights for our CF care community, including updates about Community Partnerships and the Cystic Fibrosis Nutrition and Social Work Consortium.