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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Wednesday Feb 26, 2020
Wednesday Feb 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….
Tuesday Feb 18, 2020
Tuesday Feb 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.
Tuesday Feb 18, 2020
Tuesday Feb 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.
Tuesday Dec 31, 2019
Tuesday Dec 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).
Tuesday Dec 31, 2019
Tuesday Dec 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).
Wednesday Oct 09, 2019
Wednesday Oct 09, 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.
Wednesday Oct 09, 2019
Wednesday Oct 09, 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.
Monday Oct 07, 2019
Monday Oct 07, 2019
A panel of six Conference speakers (Abigail Garcia, MD, Nadia Islam, PhD, David Nichols, MD, Steven Rowe, MD, MSPH, Emily Schaller, Isabel Stenzel Byrnes, LCSW, MPH) answers a wide variety of questions from the live audience as well as online viewers. The panel was part of CFRI's 32nd National CF Education Conference on July 28, 2019, and was moderated by Dr. Jeanie Hanley.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences.
Monday Oct 07, 2019
Monday Oct 07, 2019
In this insightful presentation, Mary Abigail Garcia, MD, Associate Clinical Professor at UC San Diego and Medical Director of Nutrition Support Services at Rady Children’s Hospital, gives a comprehensive overview of the different kinds of GI problems that affect people with CF. She talks about symptoms, diagnosis and treatment options of various GI complications, as well as the impact of nutrition. This presentation was part of CFRI's 32nd National CF Education Conference on July 28, 2019.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences.
Monday Oct 07, 2019
Monday Oct 07, 2019
A panel of six Conference speakers (Abigail Garcia, MD, Nadia Islam, PhD, David Nichols, MD, Steven Rowe, MD, MSPH, Emily Schaller, Isabel Stenzel Byrnes, LCSW, MPH) answers a wide variety of questions from the live audience as well as online viewers. The panel was part of CFRI's 32nd National CF Education Conference on July 28, 2019, and was moderated by Dr. Jeanie Hanley.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Chiesi USA, and Gilead Sciences.