https://www.spreaker.com/show/nordpod_1enMental HealthCopyright OffScrip Mediahttps://d3wo5wojvuv7l.cloudfront.net/t_rss_itunes_square_1400/images.spreaker.com/original/ea25ea88e8a64256754161b0dcb9c15d.jpghttps://www.spreaker.com/show/nordpod_1Thu, 02 Mar 2023 00:43:21 +0000OffScrip MediaOffScrip Mediafeeds@spreaker.comWelcome to NORDpod™, the voice of rare disease and the official podcast of The National Organization of Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve...cleanepisodichttps://www.spreaker.com/user/12420527/season-finale-the-fdas-dr-kathleen-donohDr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved treatment. Dr. Donohue oversees the national hub designed to move the needle on that statistic, providing a shared pool of resources to spark new discoveries and speed up the creation of new therapies for rare diseases. Listen for the subtle sounds of the wild thunderstorm that rolls in during their taping as they talk through the critical role patient advocacy groups play in bringing rare disease patients into making these discoveries happen. Learn about the RDCA-DAP: the all-important central repository of shared data about rare diseases, with a very alphabet-soupy name. They also cover the powerful need for advocacy groups to ensure the data they collect from patients is gathered in a way that makes it possible for them to submit it to RDCA- DAP. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org. RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement. https://c-path.org/fda-acknowledgement.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/zohAQLV3KlzkkYZPax1NVgag5MdjqImBhHvv0c40j04Wed, 22 Jun 2022 04:00:00 +0000OffScrip MediaToday on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes https://www.cuimc.columbia.edu/pulmonary/faculty-and-staff/kathleen-donohue-md, Director of the...Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved treatment. Dr. Donohue oversees the national hub designed to move the needle on that statistic, providing a shared pool of resources to spark new discoveries and speed up the creation of new therapies for rare diseases. Listen for the subtle sounds of the wild thunderstorm that rolls in during their taping as they talk through the critical role patient advocacy groups play in bringing rare disease patients into making these discoveries happen. Learn about the RDCA-DAP: the all-important central repository of shared data about rare diseases, with a very alphabet-soupy name. They also cover the powerful need for advocacy groups to ensure the data they collect from patients is gathered in a way that makes it possible for them to submit it to RDCA- DAP. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org. RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement. https://c-path.org/fda-acknowledgement.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1716community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean36fullhttps://www.spreaker.com/user/12420527/living-with-trichotillomania-pageant-queSarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.
NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org or email nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/M6AfPlZsBEv7JdbjzFBxIe6nqz46zEVM7wfqjgxG-ZUWed, 08 Jun 2022 04:00:00 +0000OffScrip MediaYou're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate https://www.instagram.com/unmindependencestate/ to the show. Since the age of 11, Sarah has been managing a condition known as...Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.
NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org or email nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2157community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean35fullhttps://www.spreaker.com/user/12420527/paying-it-forward-young-adult-brain-cancRob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American playing for the Syracuse Orange Football team, he was contemplating which NFL team he wanted to be on. Until he was diagnosed out of the blue with a Grade III Anaplastic Astrocytoma, a rare form of pediatric brain cancer. Eleven years later, he's paying it forward, raising money and awareness for needed rare disease research. He joined Matthew Zachary for a candid conversation about the terrible privilege of surviving cancer, and, as a fellow SUNY Alum, they heavily bond over their mutual love of Wegmans. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/dgJsNnPHaDl6sXfF7CWF5b-f-VtA76xcWWVb_2GPfvIWed, 25 May 2022 04:00:00 +0000OffScrip Mediahttps://www.linkedin.com/in/roblong47/ is the Executive Director at https://www.upliftingathletes.org, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American...Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American playing for the Syracuse Orange Football team, he was contemplating which NFL team he wanted to be on. Until he was diagnosed out of the blue with a Grade III Anaplastic Astrocytoma, a rare form of pediatric brain cancer. Eleven years later, he's paying it forward, raising money and awareness for needed rare disease research. He joined Matthew Zachary for a candid conversation about the terrible privilege of surviving cancer, and, as a fellow SUNY Alum, they heavily bond over their mutual love of Wegmans. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2010community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean34fullhttps://www.spreaker.com/user/12420527/the-incredibly-talented-mr-bobby-fosterBobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/eZe8s3LfkIsUrFXF_r2J3NsJCXFx6m78ZQz6MGEcHHsWed, 11 May 2022 04:00:00 +0000OffScrip Mediahttps://www.youtube.com/user/IAmBobbyFosterr is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of...Bobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2398community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean33fullhttps://www.spreaker.com/user/12420527/the-patient-experience-philip-brightMatthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital dominant hereditary disorder in which some blood vessels do not develop properly. Phil subsequently lived with a small pulmonary arteriovenous malformation in my lung. As a rare disease patient, he decided to give back to the community and pursue a career in medicine. As of this taping, Phil was recently accepted to Medical School and is looking ahead to a lifetime of critical clinical research to improve the lives of patients like him. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/y2F93yhit3wyhT7O8cCDUptyF_w05TSsADT6O_on8WUWed, 20 Apr 2022 04:00:00 +0000OffScrip MediaToday on NORDpod, https://www.matthewzachary.com welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with https://curehht.org) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital...Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital dominant hereditary disorder in which some blood vessels do not develop properly. Phil subsequently lived with a small pulmonary arteriovenous malformation in my lung. As a rare disease patient, he decided to give back to the community and pursue a career in medicine. As of this taping, Phil was recently accepted to Medical School and is looking ahead to a lifetime of critical clinical research to improve the lives of patients like him. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1734community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean32fullhttps://www.spreaker.com/user/12420527/one-piece-of-the-puzzle-dr-adrienne-hammDr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a physician started when she was eight years old when she read an article about retinoblastoma, which is cancer with a genetic cause. She decided then that she wanted to cure cancer. She joins Matthew Zachary to discuss a rare condition known as Hereditary Hemorrhagic Telangiectasia (HHT) and the differences in pediatric and adult care with specific regard to screenings and early detection. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/lolofIIb5ubD8V2lsS61ZwnrkwLrYLQa6my4wFU4QfsWed, 13 Apr 2022 04:00:00 +0000OffScrip Mediahttps://www.cincinnatichildrens.org/bio/h/adrienne-hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a physician...Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a physician started when she was eight years old when she read an article about retinoblastoma, which is cancer with a genetic cause. She decided then that she wanted to cure cancer. She joins Matthew Zachary to discuss a rare condition known as Hereditary Hemorrhagic Telangiectasia (HHT) and the differences in pediatric and adult care with specific regard to screenings and early detection. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1940community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean31fullhttps://www.spreaker.com/user/12420527/from-pain-to-purpose-kari-luther-rosbeckKari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/rUJkFmeLYfDEUhHEdiSLEdBDlT7sr-IbJZedGR5QxIIWed, 30 Mar 2022 05:00:00 +0000OffScrip Mediahttps://www.tscalliance.org/our-team/kari-luther-rosbeck/ is the President & Chief Executive Officer of the https://www.tscalliance.org/, a nonprofit whose mission is to find a cure for https://www.tscalliance.org/about-tsc/what-is-tsc/ (TSC)...Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2121community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean30fullhttps://www.spreaker.com/user/12420527/chris-anselmo-the-accidental-muscular-dyChris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon after diagnosed with Dysferlinopathy, specifically, Limb-Girdle muscular dystrophy, a rare muscle-weakening disease. No one asks to get sick but he went beast mode as a prolific blogger sharing his story and documenting the very real issues he had facing isolation, depression, anxiety, and a desire to make a difference for others like him.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/HT6-2iEjoQcxEbCJVbFH5-yFJPJZbEKAYYqLCCUr5uMWed, 16 Mar 2022 05:00:00 +0000OffScrip Mediahttps://www.linkedin.com/in/christopher-anselmo-31aa2a7/ is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in...Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon after diagnosed with Dysferlinopathy, specifically, Limb-Girdle muscular dystrophy, a rare muscle-weakening disease. No one asks to get sick but he went beast mode as a prolific blogger sharing his story and documenting the very real issues he had facing isolation, depression, anxiety, and a desire to make a difference for others like him.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1801chris anselmo,community,digital health,living rare,living strong,mike porath,muscular dystrophy,national organization for rare,nordpod,peter saltonstall,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean29fullhttps://www.spreaker.com/user/12420527/rare-disease-day-2022-with-actor-adam-roRare Disease Day, we are proud to welcome actor and social media influencer Adam Rose. Adam has amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often sporting a blue cardigan. He is also a rare disease patient, advocate, and activist sharing his story about living with Gaucher’s Disease.Rare Disease Day is committed to raising awareness for the community. This annual commemoration is focused on the theme of health equity. Part of health care inequity involves a lack of access to an accurate and timely diagnosis, treatment, and information about your disease. By raising awareness and showing your stripes, you can help improve the visibility of rare diseases.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/SSxVW5RlWcLcuDIEv8gig4WQ0JF3gn6pwOKt1ETaCXEFri, 25 Feb 2022 20:14:53 +0000OffScrip MediaWelcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of https://www.rarediseaseday.org/, we are proud to welcome actor and social media influencer https://www.tiktok.com/@realadamrose?lang=en. Adam has...Rare Disease Day, we are proud to welcome actor and social media influencer Adam Rose. Adam has amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often sporting a blue cardigan. He is also a rare disease patient, advocate, and activist sharing his story about living with Gaucher’s Disease.Rare Disease Day is committed to raising awareness for the community. This annual commemoration is focused on the theme of health equity. Part of health care inequity involves a lack of access to an accurate and timely diagnosis, treatment, and information about your disease. By raising awareness and showing your stripes, you can help improve the visibility of rare diseases.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2167community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean28fullhttps://www.spreaker.com/user/12420527/dr-edward-neilan-nords-chief-medical-andDr. Edward Neilan, NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) program that NORD established in partnership with FDA and the Critical Path Institute (C-Path) He carries a unique perspective as a physician and researcher and would like to focus this episode of NORDpod on the value of data sharing from a clinician’s perspective (which was also the topic he spoke about during the virtual 2021 RDCA- DAP Annual Workshop). Patient participation in the RCDA-DAP programs is a "pay it forward" opportunity to advance critical research and you're going to learn how you – yes you the listener – can choose to take an active role in this really important advocacy. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit www.rarediseases.org.
*RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/03L9mqG1Npfzj2edtS0GTkbpUF1WO0UhzqMQR5JlhXQWed, 22 Dec 2021 05:00:00 +0000OffScrip MediaOn the show today, we welcome https://rarediseases.org/nord-welcomes-edward-neilan-md-phd-as-chief-medical-and-scientific-officer/ NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including...Dr. Edward Neilan, NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) program that NORD established in partnership with FDA and the Critical Path Institute (C-Path) He carries a unique perspective as a physician and researcher and would like to focus this episode of NORDpod on the value of data sharing from a clinician’s perspective (which was also the topic he spoke about during the virtual 2021 RDCA- DAP Annual Workshop). Patient participation in the RCDA-DAP programs is a "pay it forward" opportunity to advance critical research and you're going to learn how you – yes you the listener – can choose to take an active role in this really important advocacy. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit www.rarediseases.org.
*RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1893community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean27fullhttps://www.spreaker.com/user/12420527/bonus-the-2021-nord-breakthrough-summithttps://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/Bqd-Bb2ktGnCVTamwm3DU9Yc6PWzGLrmYMo8-dvbG_sWed, 08 Dec 2021 05:00:00 +0000OffScrip MediaToday’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what’s new, relevant, and on the horizon in the rare disease space. The...https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2736community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseasecleanbonushttps://www.spreaker.com/user/12420527/one-fathers-barefoot-1-200-mile-journeyhttps://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/W_FLzLjBeAC0RBVyxaQePqTc7F0S-z2gioXP1H9S0IEWed, 24 Nov 2021 05:00:00 +0000OffScrip MediaChris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients like his...https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2137chris brannigan,community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean26fullhttps://www.spreaker.com/user/12420527/meet-kam-redlawsk-disability-advocateKam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There's so much to unpack about her that can only be explained by hearing her story and understanding the journey she's undertaken. I'm not too fond of cat poster slogans, but she does make lemonade from her lemons. She has an extraordinary story, has written incredible pieces, and her Instagram will blow your mind. Kam is the very definition of what it means to be an advocate; when no one expects to become one, and they're thrust into the world of rare disease. And now she's giving back and inspiring hundreds of thousands of people. Enjoy the show.For more information about Kam, visit https://www.kamredlawsk.com.NORDpod is the official podcast of the National Organization for Rare Disorders. More at https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/ekHNDe7TFfPNhlLiU5RqbYpKyZK6L38pZg2avyIjnzIWed, 10 Nov 2021 21:00:00 +0000OffScrip MediaOn the show today, https://twitter.com/KamRedlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE...Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There's so much to unpack about her that can only be explained by hearing her story and understanding the journey she's undertaken. I'm not too fond of cat poster slogans, but she does make lemonade from her lemons. She has an extraordinary story, has written incredible pieces, and her Instagram will blow your mind. Kam is the very definition of what it means to be an advocate; when no one expects to become one, and they're thrust into the world of rare disease. And now she's giving back and inspiring hundreds of thousands of people. Enjoy the show.For more information about Kam, visit https://www.kamredlawsk.com.NORDpod is the official podcast of the National Organization for Rare Disorders. More at https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1964community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean25fullhttps://www.spreaker.com/user/12420527/the-next-generation-of-rare-disease-advoLewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!) The condition is called IGA Vasculitis and typically affects 2 in 100,000 children each year. As a college student, this threw everyone for a loop, and now Lewis has to spend the rest of his life managing chronic kidney disease, among other fabulous things. He is a genuinely authentic voice for our next great generation. He advocates not just for rare disease awareness but for inclusivity, speaking out as a vocal member of the LGBTQ community. With all that said, we've got a ton of stuff in common and bonded in real-time over the very meaning of advocacy, never accepting the status quo and living life to help others. Follow Lewis on Instagram at https://instagram.com/lewisfreese1.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/-NtpAGRc623Ol3SATkXmdf3FmnAfmW9zmaT5iXIZbnkWed, 27 Oct 2021 04:00:00 +0000OffScrip MediaJoining me today is https://www.instagram.com/lewisfreese1/, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!)...Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!) The condition is called IGA Vasculitis and typically affects 2 in 100,000 children each year. As a college student, this threw everyone for a loop, and now Lewis has to spend the rest of his life managing chronic kidney disease, among other fabulous things. He is a genuinely authentic voice for our next great generation. He advocates not just for rare disease awareness but for inclusivity, speaking out as a vocal member of the LGBTQ community. With all that said, we've got a ton of stuff in common and bonded in real-time over the very meaning of advocacy, never accepting the status quo and living life to help others. Follow Lewis on Instagram at https://instagram.com/lewisfreese1.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2036community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean24fullhttps://www.spreaker.com/user/12420527/the-strength-of-familieshttps://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/4WLjl3bzGTQwQfaBvL-_f_IWJrHTBmkp-JUik__fnlYWed, 13 Oct 2021 04:00:00 +0000OffScrip MediaOn the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained...https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2149community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean23fullhttps://www.spreaker.com/user/12420527/rare-cancer-day-an-interview-with-dan-dr Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and hereditary colon cancer warrior. After his initial colonoscopy, he was recommended for a genetic panel, passed along to specialists, was diagnosed and treated (surgically) for AFAP/hereditary colon cancer all within a two-month span. Since then, Dan has worked alongside leading researchers/clinicians in the field to provide a patient’s perspective as well as raise awareness for rare cancers, destigmatize ostomy bags, and lead a high quality of life as someone living with this condition. In this episode, we explore the positive impact that having access to a quick diagnosis, trained physicians, and ongoing treatment/testing can have on rare cancers. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/U_baIhhAqFLQyuupVKnfAf5Z9mCYllydO2VX55tFPwEWed, 29 Sep 2021 04:00:00 +0000OffScrip MediaIn celebration and recognition ofhttps://rarediseases.org/get-involved/rare-cancer-coalition/rare-cancer-day/, I had the pleasure of speaking with https://www.worldcancerday.org/story/dan-dry-dock-united-states. Dan is a retired Navy, Operation Desert... Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and hereditary colon cancer warrior. After his initial colonoscopy, he was recommended for a genetic panel, passed along to specialists, was diagnosed and treated (surgically) for AFAP/hereditary colon cancer all within a two-month span. Since then, Dan has worked alongside leading researchers/clinicians in the field to provide a patient’s perspective as well as raise awareness for rare cancers, destigmatize ostomy bags, and lead a high quality of life as someone living with this condition. In this episode, we explore the positive impact that having access to a quick diagnosis, trained physicians, and ongoing treatment/testing can have on rare cancers. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1985community,covid-19,digital health,living rare,living strong,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease community,rare disease day,rare diseases,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseaseclean22fullhttps://www.spreaker.com/user/12420527/sturm-and-drang-one-disabled-journalist-Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to hear to know. Through a necessary pivot to journalism, Karina is now one of the most vocal rare disease activists around, and her blog, "Holy Shit I Am Sick," is read by thousands. Her must-watch film, "We Are Visible," is so multi-award-winning and critically acclaimed, there's an endless scroll of credits on the homepage. This is how you advocate. Enjoy our conversation.NORDpod is the official podcast of the National Organization for Rare Disorders (NORD®) For more information, visit https://rarediseases.org and email nordpod@rarediseases.org with comments or feedback.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/n1VPCuX8JEaNz1qGrqXNMGzIFO7yHP9695AyJZ9MUeUWed, 15 Sep 2021 04:00:00 +0000OffScrip MediaKicking off Season 3 of NORDpod, I am joined by https://www.karina-sturm.com/en/, a disabled journalist, https://www.holy-shit-i-am-sick.de/en/, author, and https://www.we-are-visible-film.com who tries to connect with chronically ill people around...Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to hear to know. Through a necessary pivot to journalism, Karina is now one of the most vocal rare disease activists around, and her blog, "Holy Shit I Am Sick," is read by thousands. Her must-watch film, "We Are Visible," is so multi-award-winning and critically acclaimed, there's an endless scroll of credits on the homepage. This is how you advocate. Enjoy our conversation.NORDpod is the official podcast of the National Organization for Rare Disorders (NORD®) For more information, visit https://rarediseases.org and email nordpod@rarediseases.org with comments or feedback.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2220community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseaseclean21fullhttps://www.spreaker.com/user/12420527/fifteen-months-later
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/ZyxAeCmTyJ0XbREsFQ-yo74LiGx9sVMPdXUX9_7gab8Wed, 09 Jun 2021 04:00:00 +0000OffScrip MediaToday on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s...
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>2446community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/rare-voices-of-nord-jo-ann-dangelo
Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/2rocsRa4ctL1irDs3jL_bmdnaMbjz-_nqKlIgZEuy1wWed, 26 May 2021 04:00:00 +0000OffScrip MediaOn the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the...
Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1712community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/rare-disease-research-whats-all-this-the
Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>gid://art19-episode-locator/V0/zX2ni0cwHdb2GS0vlZCRJf6qO-GxzEYKFO2N9rFUWwQWed, 14 Apr 2021 05:23:03 +0000OffScrip MediaOn the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be discussing NORD’s I AM RARE platform, a patient...
Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.]]>1807community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/season-two-premiere-with-ceo-peter-saltogid://art19-episode-locator/V0/9wr_vOntFN2sCUYl7sMzSPCC7mly6dqBWNP6lzrHiO8Wed, 03 Mar 2021 06:00:00 +0000OffScrip MediaIt is Season Two of NORDPod, and we're kicking it off in style with a "Last Year Tonight"-themed episode with NORD's President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. 2020 was not the best of times, but it was not the...1928community,covid-19,digital health,living rare,living strong,mike porath,national organization for rare,nordpod,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease community,rare disease day,rare diseases,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/bonus-opening-plenary-2020-lrls-patient-https://rarediseases.org/shareyourstory/]]>gid://art19-episode-locator/V0/cO7_JW41-PlGWcXALy22mMkqadY2r4EiGwp54CkT9FUWed, 23 Dec 2020 06:00:00 +0000OffScrip MediaAt NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare disease impacts our lives. This week’s episode is a supersized BONUS POD from the 2020 Living Rare...https://rarediseases.org/shareyourstory/]]>5032community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/welcome-to-the-nord-rare-cancer-coalitiogid://art19-episode-locator/V0/Rtf2BgKPny7OQ8Tkl7t7TzXdzlrvNjt_kTH65G6DqUcWed, 16 Dec 2020 06:00:00 +0000OffScrip MediaOn the show today, we’re talking all things rare cancer and highlighting the incredible impact that NORD’s Rare Cancer Coalition has made since it was founded — by our two guests: John Hopper President of the Board of the Fibrolamellar Cancer...1984community,covid-19,fibrolamellar,living rare,living strong,mike porath,nord,peter saltonstall,rare cancer,rare cancer coalition,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/prescription-drug-compliance-adherence-ahttps://spencerhealthsolutions.com]]>gid://art19-episode-locator/V0/9_P6RXYYD_jvzQFUqoTA_4PyaiAIUUlA95fMPvvt6R0Wed, 02 Dec 2020 05:00:00 +0000OffScrip MediaOn the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — make life easier for families and caregivers by simplifying the complex world of prescription medication...https://spencerhealthsolutions.com]]>1943community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,spencer health solutions,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/sarah-hill-a-young-life-interruptedgid://art19-episode-locator/V0/V27DdlPOuc6UC7o60iIBe9hPMSFVzeZfcyzfH72WzDoWed, 18 Nov 2020 06:00:00 +0000OffScrip MediaToday’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a life interrupted at a very young age. After being...1560community,covid-19,deafness,diabetes insipidus,living rare,living strong,mike porath,nord,optic atrophy,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease day,rare diseases,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/more-telehealth-with-pamela-gavin-chief-gid://art19-episode-locator/V0/G2dfTpoxw0A0LxOlXJbxnk9Uc1NTdG61V8q78UumSNgWed, 04 Nov 2020 05:00:00 +0000OffScrip MediaOn the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — three-part series on Telehealth… only this time around, it’s all about policy, advocacy, and how the only thing that has ever moved the...1494community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/crisis-management-how-to-endure-with-stygid://art19-episode-locator/V0/9XnrXl-Od2EuIuaA50xCzomIsOSu9Mw6Rc20eJjCNK4Wed, 21 Oct 2020 05:00:00 +0000OffScrip MediaOn the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mary McGowen, Executive Director of the Myositis...124community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/bonus-nordingout-meet-the-founders-of-nogid://art19-episode-locator/V0/QfccNjae-RyDkWa33jnqT7kXDj1ZImJH_leMaue0wFoWed, 14 Oct 2020 05:00:00 +0000OffScrip MediaOn this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic role reversal, she dropped by OffScrip Media Studios in downtown Manhattan for a LIVE in-person interview...1987community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,nordingout,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfullhttps://www.spreaker.com/user/12420527/telehealth-from-bogeyman-to-clinical-pragid://art19-episode-locator/V0/bqy5UYr3qMN8vJniYj_Ihl0MjXktxDRR3PPlLS0PXS0Wed, 07 Oct 2020 05:00:00 +0000OffScrip MediaOn today's show, our time's enduring topic — No, not COVID, but it does make a distinct and necessary cameo on the show — No, we’re talking about Telehealth. Telemedicine. Tele–all the things. Perhaps even the telephone when required. Joining us are...1454community,covid-19,living rare,living strong,matthew zachary,mike porath,nord,peter saltonstall,rare cancer,rare cancer day,rare cancers,rare disease,rare disease day,rare diseases,stupid cancer,stupid cancer show,telehealth,telemedicine,the mighty,voice of rare diseasecleanfull