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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Apr 22, 2020
Apr 22, 2020
34 min
Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past week related to antibody tests, impacts on those with CF, and much more. Dr. Moss has generously offered to continue these Q&A sessions to keep us informed. Please feel free to submit additional questions by email to cfri@cfri.org. This most recent session was recorded on April 22, 2020.
We thank Vertex Pharmaceuticals, Gilead Sciences, Genentech, and Chiesi USA for their support of these podcasts.
Apr 15, 2020
Apr 15, 2020
45 min
Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past week. Dr. Moss has generously offered to continue these Q&A sessions to keep us informed. Please feel free to submit additional questions by email to cfri@cfri.org. This most recent session was recorded on April 15, 2020.
We thank Vertex Pharmaceuticals, Gilead Sciences, Genentech, and Chiesi USA for their support of these podcasts.
Apr 1, 2020
Apr 1, 2020
51 min
In this second Q&A session, recorded April 1, Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past week. Dr. Moss has generously offered to continue these sessions to keep us informed.
Please feel free to submit additional questions by email to cfri@cfri.org.
We thank Vertex Pharmaceuticals, Gilead Sciences, Genentech, and Chiesi USA for their support of these podcasts.
Mar 25, 2020
Mar 25, 2020
41 min
At CFRI's highly informative town hall meeting about CF and COVID-19 on March 17, we had more questions from participants than time allowed us to answer. As a follow-up, Rick Moss, MD, of Stanford University, answers those remaining questions.
If you still have questions after watching both the town hall meeting and this Q&A video, please feel free to submit them by email to cfri@cfri.org. We will work on releasing another Q&A session with Dr. Moss in the near future.
Mar 25, 2020
Mar 25, 2020
41 min
At CFRI's highly informative town hall meeting about CF and COVID-19 on March 17, we had more questions from participants than time allowed us to answer. As a follow-up, Rick Moss, MD, of Stanford University, answers those remaining questions.
If you still have questions after watching both the town hall meeting and this Q&A video, please feel free to submit them by email to cfri@cfri.org. We will work on releasing another Q&A session with Dr. Moss in the near future.
Mar 18, 2020
Mar 18, 2020
1hr 35 min
On March 17, CFRI hosted a Town Hall discussion via Zoom and Facebook Live to provide COVID-19 information and resources to our CF community. Dr. Rick Moss, CF clinician and researcher at Stanford, and Dr. Yelizaveta Sher, psychiatrist at the Adult CF Center at Stanford provided overviews of the physical and mental health-related impacts of the virus on those with CF, and then answered questions from our community.
Feb 26, 2020
Feb 26, 2020
11 min
Because hand shaking is known to be a primary source for the transmission of disease, CFRI’s CF Adult Advisory Committee is launching a campaign to raise awareness of the hazards of hand shaking, with fun alternative means to say hello and goodbye. In this podcast, members of the Committee talk about issues they’ve encountered with our hand-shaking culture, and some ways they have found to work around it.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Gilead Sciences.
Music Credit: STEESH Track Name: "The Feelings" Music By: STEESH @ http://www.twitter.com/steeshhaggie Official "STEESH" YouTube Channel HERE - https://www.youtube.com/iamsteesh/?su….
Feb 26, 2020
Feb 26, 2020
11 min
Because hand shaking is known to be a primary source for the transmission of disease, CFRI’s CF Adult Advisory Committee is launching a campaign to raise awareness of the hazards of hand shaking, with fun alternative means to say hello and goodbye. In this podcast, members of the Committee talk about issues they’ve encountered with our hand-shaking culture, and some ways they have found to work around it.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Gilead Sciences.
Music Credit: STEESH Track Name: "The Feelings" Music By: STEESH @ http://www.twitter.com/steeshhaggie Official "STEESH" YouTube Channel HERE - https://www.youtube.com/iamsteesh/?su….
Feb 18, 2020
Feb 18, 2020
58 min
As the use of quality adjusted life years (QALYs) is increasingly suggested as a method to determine drug pricing, it is vital to understand the flaws in this methodology, and how it harms the CF community by devaluing the lives of those with disease, dismissing the value of new medications, and ultimately, interfering with access to new therapies. In this podcast, Ari Ne’eman, a consultant to the Partnership to Improve Patient Care (www.pipcpatients.org/), provides an extremely insightful overview of QALY, and the impact of ICER in applying this to its recent evaluation of Trikafta. While there is specific focus on CF, the information contained in the video applies to all disease groups.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Gilead Sciences.
Feb 18, 2020
Feb 18, 2020
58 min
As the use of quality adjusted life years (QALYs) is increasingly suggested as a method to determine drug pricing, it is vital to understand the flaws in this methodology, and how it harms the CF community by devaluing the lives of those with disease, dismissing the value of new medications, and ultimately, interfering with access to new therapies. In this podcast, Ari Ne’eman, a consultant to the Partnership to Improve Patient Care (www.pipcpatients.org/), provides an extremely insightful overview of QALY, and the impact of ICER in applying this to its recent evaluation of Trikafta. While there is specific focus on CF, the information contained in the video applies to all disease groups.
CF Community Voices is generously sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Gilead Sciences.