By Paul Kidwell
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Openly Rare with Paul Kidwell is a monthly podcast covering all aspects of rare diseases and will feature conversations with newsmakers and leaders from the world of biomedical and academic research, patient engagement, caregiving, rare disease patients and their families, as well as others who in some way have been touched by the growing number of rare illnesses. The podcasts will cover a range of topics, including research and treatment, the business and science of rare disease drug development, patient storytelling, policy debates and the cultural impact of rare diseases. To learn more about Paul Kidwell and to hear the Openly Rare podcast, go to paulkidwell.com. You can also listen to the Openly Rare podcast on Apple Podcasts, Google Podcasts, Stitcher, Tunein, Spotify and with all Android players.
||CleanRare Disease Day -005||A re-broadcast of a patient panel discussion at the MassBio annual Rare Disease Day event that took place on February 28, 2019. The panel was titled “Patient Well-being Beyond Outcomes” and featured an honest and often emotional discussion on the ne||3/11/2019||Free||View in iTunes|
||CleanAdam & Whitney Hayden -004||Adam Hayden suffers from a rare form of brain cancer, glioblastoma, for which there is no cure and is usually terminal. A sad fact that he, his wife Whitney, and three young children must live with each day of what will likely be the rest of his abbrev.||2/11/2019||Free||View in iTunes|
||CleanJoyce Kulhawik -003||Interview with Joyce Kulhawik, Emmy Award-winning arts and entertainment critic and three-time cancer survivor. Even with cancer treatment advancements a diagnosis that leads to remission and survival is still a rare occurrence.||10/30/2018||Free||View in iTunes|
||CleanPhilip R. Reilly, M.D. -002||Interview with Philip R. Reilly, M.D., author, “Orphan: The Quest to Save Children with Rare Genetic Disorders” Dr. Reilly’s book, Orphan, is equal parts oral history and whodunit, and in his discussion with the host shares stories of genetic dise||10/2/2018||Free||View in iTunes|
||CleanRare Disease Film -001||Interview with Daniel DeFabio and Bo Bigelow, co-creators of “DISORDER: The Rare Disease Film Festival.” Host Paul Kidwell explores the most powerful storytelling medium of movies and their ability to offer the viewer a spellbinding blend of the vis||8/3/2018||Free||View in iTunes|
With hundreds of podcast to listen to, don’t miss out on Openly Rare. A thoughtful peek into the Rare Disease community and it’s experiences that parents and caregivers face daily. A must listen...
Paul Kidwell is a fantastic storyteller who, in this remarkable podcast opens up the world of rare diseases in a new and intelligent way. I’m looking forward to future programs and highly recommend subscribing to this program.
Paul Kidwell is . . .
. . . insightful, knowledgable and well spoken on the topic of rare disease and brings all perspectives into a wider discourse through his talks with guests that study, treat or live with these illnesses. An important topic, an impactful podcast.