Community Voice: Monthly Results Update
October 2022 Edition
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Dear Community Voice Member,
Welcome to the October 2022 edition of the Monthly Results Updates!
In these digests you will learn about the impact Community Voice members are making through participation in recent opportunities. If you would like to read about past projects, browse previous editions.
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2022 North American Cystic Fibrosis Conference: Register Today!
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NACFC brings together CF researchers and clinicians to discuss and share ideas on the latest advancements in CF research, care, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF. Community members can register for free, live access to all three plenary sessions and six additional sessions selected by members of the CF Adult Advisory Council.
Slides and audio for all symposia, workshops, plenaries, and many other sessions will be available complimentary on the CF Foundation's YouTube channel two weeks after the conference concludes.
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Additionally, congratulations and best of luck to Community Voice members Melody Chaney, Erin Fortner, David Hansen, and Elizabeth Kellner selected for a panel on Culturally Aware CF Care. This session aims to build on ongoing efforts to uncover barriers to CF care and strengthen relationships between care teams, patients, and families; panelists will share their diverse backgrounds and ways they feel CF care teams can be more culturally responsive to their lived experiences and others with similar experiences.
Be on the lookout for a Community Voice at NACFC recap email with links to session recordings and a live post-NACFC community question-and-answer session with CF care and research experts moderated by an adult living with cystic fibrosis in early December.
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Abbvie Focus Group Project
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In August, a small group of Community Voice members comprised of people with CF and caregivers participated in focus groups with AbbVie Pharmaceuticals. The purpose of the focus groups was to discuss current unmet medical needs and optimal clinical trial design for people with CF. This work shed light on opportunities for future drug development and best practices for clinical trial design. Hearing directly from people with CF and caregivers is essential in informing future work. Thank you to the 17 Community Voice members who participated in these focus groups, virtually and offline.
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ResearchCon 2023 Co-Chairs
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Recently, the CF Foundation’s Virtual Connections team sent out a call for applications for community members to co-chair ResearchCon 2023, a free virtual event dedicated to CF science and research for anyone with a personal or professional connection to CF. After receiving 9 applications, we are pleased to announce the Community Voice members selected to co-chair this event alongside a CF clinician.
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The CF Foundation will host the 5th annual ResearchCon in April of 2023. Learn more about the CF Foundation’s community conferences and other virtual events.
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In the Month of October, We Celebrated -
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Hispanic Heritage Month
Community Voice is proud to recognize September 15 through October 15 as Hispanic Heritage Month and celebrate the legacy, contributions, and achievements of the Hispanic/Latino community. This celebration aims to highlight the rich diversity of the Hispanic/Latino CF community and Community Voice membership.
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UPCOMING & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as mental health, autoimmune disease, and more. In the meantime, check out open opportunities to participate in today!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 158 members who have written 358 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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