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The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation.
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Dear Community Voice member,
Welcome to the November edition of the Monthly Results Updates!
New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, click here to browse previous editions.
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Announcement:
CF Foundation Seeks Input from CF Communities of Color
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Cystic fibrosis affects people of many different racial and ethnic backgrounds; however, for many years there has not been adequate recognition or representation of Black individuals and other people of color within the CF community.
As part of its early work to address racism and discrimination, the CF Foundation is working to deepen its understanding of this issue by listening to Black members of the CF community, other people of color with CF, and leading researchers who are focused on health disparities. In those conversations, sobering evidence affirms that race impacts every aspect of an individual’s experience with CF. Please click here to view our early findings.
As we begin to take action guided by these findings, it is critical that we continue to hear from diverse voices to better understand the unique needs and perspectives of people of color within the CF community and how race has impacted their care and their sense of community. If you know anyone who identifies as a person of color in the CF community and may be interested in helping shape the Foundation's efforts to create an equitable and inclusive community for all people with CF, please encourage them to complete this interest form. As part of this effort, the CF Foundation is also recruiting individuals to join a working group that will focus on understanding how racism affects the Black CF community, including its impacts on research and care.
To view the CF Foundation’s announcement in Spanish, please click here. Additionally, we would like to thank Community Voice members Alexia Cargal, Cecilia Lozano, and Sylvia Mazuera for their help in reviewing this Spanish-translated announcement and other materials related to this effort!
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Open Opportunity:
Impact of COVID-19 on the Rare Disease Community
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The Rare Diseases Clinical Research Network, in collaboration with and funded by the National Institutes of Health, is conducting a survey to study the impact of the novel coronavirus (COVID-19) on the rare disease community. People with rare diseases and their caregivers are invited to complete this 20-minute online survey to share how this pandemic is impacting themselves and their families. Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. To learn more and participate in this survey, please click on the button below by Tuesday, December 15th at 11:59 p.m., ET.
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Please note the Cystic Fibrosis Foundation is not involved in this project beyond its dissemination. For additional information or questions, please contact the study team at rd.covid19@cchmc.org.
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2020 NACFC Livestream Archives Available
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Explore our YouTube page to watch plenaries, discipline groups, workshops, and symposium sessions on topics ranging from lessons learned from the COVID-19 pandemic, cystic fibrosis-related diabetes, CFTR modulators, and more.
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2019 Patient Registry Snapshot
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The CF Foundation has recently published the 2019 Cystic Fibrosis Foundation Patient Registry Snapshot, an online resource for people with CF and their families to learn about general trends in the health of people with CF including average life expectancy, life milestones achieved, median FEV1 predicted and body mass index, and reported lung transplants. Although the snapshot only reflects 2019 data, sessions on the impact of 2020 events, like COVID-19, on CF care was presented at this year’s NACFC. visit cff.org for the Patient Registry Annual Data Report.
Thank you to the Community Voice members who participated in our recent projects related to the Patient Registry and helped inform a shift in how the CF Foundation is sharing Registry information directly with people with CF and their families!
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PRISM CF Study Advisory Team
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The PRISM-CF Study Team is developing a multi-center clinical trial to test an innovative resilience intervention -- Promoting Resilience in Stress Management (PRISM) -- in adolescents and young adults with CF. The study team sent out a call for applications to recruit one community member to serve on the advisory team to provide essential input and guidance to the study team during protocol development and all throughout the study’s duration. Congratulations to Community Voice member Mary Aalbue who will serve on this team!
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ResearchCon 2021 Executive Committee
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Designed by adults with CF, family members, clinicians, researchers, and more, the CF Foundation’s community conferences provide the CF community the opportunity to connect, share, and learn through open and honest dialogue. Recently, the CF Foundation’s Virtual Connections team sent out a call for applications for community members to help shape ResearchCon 2021, a free virtual event that is dedicated to CF science and research for anyone with a personal or professional connection to CF.
After receiving 11 applications, we are pleased to announce the following Community Voice members who have accepted to serve on the ResearchCon 2021 Executive Committee!
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ResearchCon will take place on April 15, 2021. To learn more about the CF Foundation’s community conferences and other virtual events, please visit cff.org/VirtualEvents.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 133 members who have written 292 posts since the CF Community Blog launched!
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