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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
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.
Tuesday Jun 20, 2023
Tuesday Jun 20, 2023
In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.
Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.
Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA
Tuesday Jun 20, 2023
Tuesday Jun 20, 2023
In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.
Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.
Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA
Wednesday Apr 19, 2023
Wednesday Apr 19, 2023
Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.
NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.
Edited by Brandon Delgado.
CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.
Wednesday Apr 19, 2023
Wednesday Apr 19, 2023
Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.
NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.
Edited by Brandon Delgado.
CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.