COVID-19 Town Hall Meeting - March 17, 2020
March 18, 2020
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.
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Greet Me Germ Free
February 26, 2020
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….
Music Credit: STEESH Track Name: "Fall Into Place" Music By: STEESH @ http://www.twitter.com/steeshhaggie Official "STEESH" YouTube Channel HERE - https://www.youtube.com/iamsteesh/?su....
Watch Now:
Greet Me Germ Free (audio)
February 26, 2020
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….
Music Credit: STEESH Track Name: "Fall Into Place" Music By: STEESH @ http://www.twitter.com/steeshhaggie Official "STEESH" YouTube Channel HERE - https://www.youtube.com/iamsteesh/?su....
How the QALY Harms People with CF – Ari Ne’eman
February 18, 2020
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.
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How the QALY Harms People with CF – Ari Ne’eman (Audio)
February 18, 2020
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.
Town Hall Discussion on CF and Mental Health
December 31, 2019
On December 3, 2019, CFRI hosted an online Town Hall Discussion on CF and mental health, during which participants from around the U.S. joined in to share their experiences with the subject. The meeting started with Meg Dvorak, LCSW, CF Social Worker at the Stanford Adult CF Center, and Siri Vaeth, CFRI executive director and mother of an adult daughter with CF. They set the stage for an online town hall-style discussion via Zoom.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences (2019).
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Town Hall Discussion on CF and Mental Health (Audio)
December 31, 2019
On December 3, 2019, CFRI hosted an online Town Hall Discussion on CF and mental health, during which participants from around the U.S. joined in to share their experiences with the subject. The meeting started with Meg Dvorak, LCSW, CF Social Worker at the Stanford Adult CF Center, and Siri Vaeth, CFRI executive director and mother of an adult daughter with CF. They set the stage for an online town hall-style discussion via Zoom.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences (2019).
Town Hall Discussion on CF-related GI issues
October 9, 2019
On September 26, 2019, CFRI hosted an online Town Hall Discussion on CF-related GI issues, during which participants from around the U.S. joined in to share their experiences with the subject. The meeting started with Michelle Stroebe, MS, RD, dietician at the Adult CF Center at Stanford, and Siri Vaeth, CFRI director. They set the stage for an online town hall-style discussion via Zoom.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences.
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