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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Tuesday Sep 26, 2023
Tuesday Sep 26, 2023
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Tuesday Sep 26, 2023
Tuesday Sep 26, 2023
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Wednesday Sep 13, 2023
Wednesday Sep 13, 2023
Tuesday Aug 15, 2023
Tuesday Aug 15, 2023
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Tuesday Aug 15, 2023
Tuesday Aug 15, 2023
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Wednesday Jul 05, 2023
Wednesday Jul 05, 2023
In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Wednesday Jul 05, 2023
Wednesday Jul 05, 2023
In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Tuesday Jun 27, 2023
Tuesday Jun 27, 2023
Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:
https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Tuesday Jun 27, 2023
Tuesday Jun 27, 2023
Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:
https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.